OUR LATEST NEWS

The EHA at the 12th European Conference on Rare Diseases and Orphan Products

Last week, we attended the European Conference on Rare Diseases and Orphan Products organized by EURORDIS in Brussels. This is the biggest conference focusing on rare diseases.

These were two intense days of learning and sharing, where more than 700 participants gathered to strengthen the voices of people impacted by rare diseases and discuss concrete measures to provide a better quality of life to all those living with a rare condition.

The Rare Disease Community is Better Together! #ECRD2024

Let’s move together for Huntington Dance

🕺 As we move through #MayAwarenessMonth, we bring you a closer look throughout the history of Huntington’s Disease.

💃 Learn all about our #HuntingtonDance initiative and help us make history around the world!

The Huntington Academy team has recently created national advisory groups composed by key HD family members and HD professionals from Belgium, Bulgaria and Spain.

📢 These national advisory groups will lend their knowledge, skills and guidance to help produce the Huntington Academy educational contents.
 
🤝 We are sure that the first-hand experiences and practical examples provided by these true HD experts will make a difference in the lives of many caregivers from the global HD community, and we wish to thank all the family members and professionals who kindly accepted to be part of this project.

🌎 Each of the three partner organizations, the Ligue Huntington Francophone Belge, the Bulgarian Huntington Association and the Asociación Española Corea de Huntington is holding an online meeting with their national group to present the background and goals of the Huntington Academy project, get the knowledgeable feedback from the members and allow the national HD community to meet and connect.

The inspiring Chronicle of a Fortune Foretold from Luis Aguilar is now available on book!

Over the past months, the Moving Forward project has been disseminating the chronicles of Luis about the tears and cheers of being at risk of Huntington’s Disease.
 
Now, Luis’ unique chronicles related to Huntington’s Disease have been compiled in a bilingual edition (Spanish and English) with the wonderful illustrations of Paloma Agüera. The book has 5 original and exclusive chapters and illustrations you will not want to miss.

New research video updates section on our social media channels!

🙋‍♀️ Meet Jarelys López, the driving voice behind our new section! As the Information and Content Coordinator for the European Huntington Association, she’s here to keep the HD community updated in a simple and dynamic way.

🥳 For our very first video we want to thank you for making it happen!

Last April, Som Biotech announced the completion of recruitment of their clinical trial that tests #Bevantolol to treat Huntington’s Disease (HD) movements.

Let’s celebrate this achievement for the HD community!

Let’s move together for Huntington Dance

🕺 Here is the choreography created by Coco Style Spain to raise awareness for Huntington’s Disease worldwide by dancing to Katy Perry’s song Fireworks.
 
💃 You can now start rehearsing the steps to publish your video during #MayAwarenessMonth as part of the Huntington Dance initiative and remember to tag us on Facebook and Instagram and use the hashtag #HuntingtonDance

OPEN VACANCY! Communication Manager at the European Huntington Association.

If you are passionate about digital communications and experienced in social media and audiovisual editing, apply now for our new position as communication manager and join our international team.

We are a non-profit organization uniting people affected by Huntington’s disease (HD) in Europe. We play an important role in building and maintaining our network and provide information about HD, ongoing activities and research.

✅ Full-time position
✅ Home-based work

🟢 NEW WEBINAR VIDEO AVAILABLE: Prilenia filing for EMA approval for Pridopidine - What does this mean for patients?

Last Monday, we had a webinar with Henk Schuring, Chief Regulatory and Commercialization Officer at Prilenia, and Anne Rosser, Professor at Cardiff University, where we had the opportunity to better understand what Prilenia’s request for EMA’s (European Medicines Agency) approval of Pridopidine means for the Huntington’s Disease community.

🙌 Can’t wait to learn more? Dive into our comprehensive article, covering the webinar’s key topics and the frequently asked questions, for an in-depth understanding of the implications for patients.

👋 Moving Forward goes solo!

The Moving Forward project from the European Huntington Association is growing and working on several fronts, and is now collaborating with 🌎 9 HD Associations in Europe.

To make the Moving Forward work more visible to the national and international HD communities, we have created Facebook and Instagram accounts exclusively dedicated to this project.

☺️ We believe that having our own communication channels will make it easier for people to get the latest Moving Forward updates and take part in everything we have going on.

Follow us now and be the first one to check our new post with exercise tips for HD families and the most recent chapter written by Luis for the Chronicle of a Fortune Foretold!

💪 Ready, set, go! The kick-off meeting of the “Huntington Academy” project

A few weeks ago, the team behind the “Huntington Academy” project gathered in Brussels for a two-day meeting.

Astri Arnesen, Claudia Azañedo and Filipa Júlio from the European Huntington Association, Ruth Blanco from the Spanish Huntington Association (ACHE), Regina Gospodinova from the Bulgarian Huntington Association and Olivier Graf from the Ligue Huntington Francophone Belge have literally sat around a table to discuss the goals, action plans and next steps of the “Huntington Academy” project funded by the European initiative Erasmus+.

👩‍💻 These two days were full of productive discussions about what should be the main features and contents of this new e-learning platform that aims to educate and empower the caregivers of people impacted by HD.

It was great to get to know distinct and yet similar HD realities, share personal and professional experiences and learn from each other.

🙌 Everyone returned home stronger and more motivated than ever to make a positive contribution to the global HD community. Soon you will find out more about this project, so please stay tuned!

Upcoming webinar: Prilenia filing for EMA approval for Pridopidine – What does this mean for patients?

The European Huntington Association, in close cooperation with Prilenia, decided to organise a webinar on 🗓️ March 18th at 6pm CET to better understand this news and create a space for the Huntington’s community to learn and share their thoughts.

We are delighted to announce that Henk Schuring, Chief Regulatory and Commercialization Officer at Prilenia, will shed light on the rationale behind this decision and the process leading up to it. What factors influenced their decision?

Anne Rosser, Professor at Cardiff University, will discuss the significance of this major step for patients and families. She will share her insights on how we should perceive the opportunities presented and the precautions we should bear in mind. Following the presentations, there will be a dedicated time for questions and discussions.

💜 Register now and use this opportunity to gain insights, presented in a family-friendly language, into Prilenia’s latest news and future steps

Prilenia will ask for market approval at the European Medicines Agency for Pridopidine (an oral drug) in Huntington’s Disease.

Today, Prilenia made a groundbreaking announcement, revealing that they are going to apply for market authorization at the European Medicines Agency (EMA) within the next few months. 💪This marks a historic moment as the first-ever medicine for Huntington’s Disease (HD) reaches this critical stage.

🙌 We think this is a day to celebrate. However, we fully realise this is not the end of the journey. submitting an application to the EMA and the review process takes time, and can have both a positive or a negative output. In collaboration with Prilenia we are organizing a Webinar, to provide us all with a more in-depth understanding of the rationale behind the decision to apply for market approval and what it means for patients.

📣 It’s Rare Disease Day!

📹 And this year we have the chance to celebrate it on the 29th of February, the rarest day of the year. To raise awareness for all Rare Diseases across the globe, @EURORDIS produced this moving video where they invited people from all over the world to share their stories.

🤗 Make sure to watch it and share it, because remember that no action is too small. #RareDiseaseDay

What is equity for rare diseases?

👐 People with rare diseases all over the world face several challenges in their daily lives. This year, on Rare Disease Day, we fight for equal opportunities for everyone. 

🩺 In the Rare Disease Community, equity means access to diagnosis, treatment, health, social care and opportunity.

💙 Join us spreading the message on #RareDiseaseDay

📣 Few days for Rare Disease Day 2024!

Today, around 300 million people worldwide are living with a rare disease.

The main goal of the Rare Disease Day campaign is to advocate for equitable access to diagnosis, treatment, health and social care and social opportunity for the people affected by a rare disease.

🙌 The time to raise your voice and create awareness for rare diseases is now. Share your story with us, talk about Huntington’s Disease with your loved ones and use the campaign materials of @Eurordis for the Rare Disease Day campaign 2024.

💜 Remember, no action is too small. #rarediseaseday2024

🙌 EHA Board meeting in Amsterdam!

Today, the European Huntington Association met in Amsterdam to discuss the activity plan for the year 2024. Together, we talked about our ongoing projects, future campaigns, and potential collaborations.

💪 We are excited to take action and start our activity plan.

🎉 GREAT NEWS! We received an EU grant to develop an HD Academy

The European Huntington Association, in close collaboration with the Ligue Huntington Francophone Belge, the Bulgarian Huntington Association and the ACHE Corea Huntington Española, has just received an Erasmus+ Grant to develop an adult education project called “HD Academy”.


👨‍💻 The HD Academy will create an innovative, multilingual, and inclusive e-learning platform for education and training of formal and informal caregivers of people impacted by Huntington’s disease (HD). The project will run for 18 months and will provide a new online resource to the global HD community.


🙌 Our project had a 96 out of 100 score in this highly competitive EU call, so we are really proud of this achievement. 2024 couldn’t have started any better!

Music Therapy with Marlies Brandt

🥁 During the EHA Conference 2023 in Belgium, Marlies gave some Music Therapy classes, where the participants had the opportunity to play with some instruments and share their stories.
 
💬 “Music therapy is good for your brain because, when given assignments, the patients have to think, concentrate, memorize, take initiative, which stimulates their brain”, explains Marlies.

Do you know what you don't know about Huntington's Disease (HD)?

Different stories bring different perspectives and they all add up to what it can be like to cope with HD.

🤝 During the EHA Conference 2023 in Belgium, we had a dedicated session to present the many faces of HD. This was one of the highlights of the conference, as the attendees had the privilege to listen to the real-life experiences of brave HD advocates about being gene-positive, gene-negative, dealing with HD symptoms, caring for someone with HD, and being a person at risk.
💚 Thank you to Bruce, Javier, Rob, Saija and Tess for sharing their inspiring stories with us!

Watch now the Webinar video: Why do we need a second Generation HD trial?

The European Huntington Association, in collaboration with Roche, organized a webinar on January 9th to discuss the updates on the GENERATION HD2 clinical trial and address all the questions about why this trial is needed.
 
💙 We want to thank the webinar speakers Professor Sarah Tabrizi (UCL) and Doctor Peter McColgan (MD PhD) from Roche, for their great presentation and valuable information. We would also like to thank the 100 attendees for their participation during the webinar.

Upcoming webinar with Roche: 🔬 Why do we need a second Generation HD trial?

Webinar on January 9th at 6 pm CET.

🌎 With 70 trial sites activated worldwide and over 30% of the trial enrolment, GENERATION HD2 clinical trial is on the right path. But we need to speed up to have the trial fully recruited as soon as possible to get the results. The trial aims to explore the effect on biomarkers and function in the 300 participants, all in early phases of HD and in the age between 25 and 50. 

In this webinar, 👩‍🔬 Professor Sarah Tabrizi (UCL) and 👨‍🔬 Doctor Peter McColgan (MD PhD) from Roche will answer your questions about the importance of this trial. It is always a great pleasure to bring the HD family members together with experts to solve all the doubts about the ongoing trials in the clearest way possible. 
🙌 Don’t miss this opportunity. 

UniQure news: Promising signs of efficacy for gene theraphy

On December 20th, Uniqure released updates from their trial where the gene therapy AMT130 is being tested. Up to 30 months after the one-time dosing has been given, the trial participants who have received the lowest dosing show signs that they maintain functions compared to people in the same disease stage who haven’t received the treatment.

“This is great news to get towards the end of the year. I am hopeful that 2024 will bring more progress for this project as well for the other HD trials and that we will take important steps towards getting treatments to patients.” – says Astri Arnesen, president of EHA.

It was a busy year for EHA! Check now the Holiday Newsletter edition

Find all the media content and session presentations from the EHA Conference in Belgium, the multiple achievements of HD-CAB throughout 2023 and the updates about the Moving Forward project expansion. In addition, there is also some new HD Trial Finder new webpage sections.

December Calendar 2023 Campaign - Celebrating the HD community

December is coming, and we have a special surprise for everyone 🎁 The International Huntington Association and the European Huntington Association want to celebrate the HD Community, that achieved so many great things this year. Each day until December 25th, we are going to share some of the accomplishments made by this amazing community 🥰

Make sure to follow us on social media so you can follow the campaign! 

✨ Relive the incredible moments from EHA Conference 2023 in Belgium!

Our recap video is here, packed with all the highlights, memories, and cherished moments from the conference sessions, meetings and activities.

🌎 With nearly 300 participants from over 23 countries, the EHA Conference in Belgium marked a decisive opportunity for the HD global community and contributed to our main values for this event: 💡 Knowledge, 💙 empathy and 💪 empowerment.

🙌 A united community for a united action. 

Exciting News! EFNA is now an official Non-State Actor with WHO Regional Office for Europe (WHO/Europe)

In 2022, the European Federation of Neurological Associations (EFNA) applied for this status with WHO/Europe, and today, it’s official! 🎉 This gives them the right to attend meetings, submit statements, and work to implement the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) across Europe.

🤝 Their common goal: reduce the prevalence of neurological conditions in Europe and elevate brain health as a valued and protected asset, benefiting society at large.

🗣️ Watch the video to see the reaction from Astri Arnesen (EHA and EFNA President), Orla Galvin (EFNA Executive Director), and Tadeusz Hawrot (EFNA Senior Policy Advisor) to this exciting news for EFNA.

LAST CHANCE TO REGISTER FOR EHA CONFERENCE 2023 IN BELGIUM - ONLY A FEW MORE PLACES AVAILABLE!

The EHA Conference is just around the corner, get ready for a variety of social and physical activities to get to know new people, learn and enjoy being part of an including community.
We are so excited to meet everyone in Blankenberge on October 19th – 22nd, 📍 at the Corsendonk Duinse Polders Hotel.

Please note:
1️⃣ Registration closes on October 8th
2️⃣ The Corsendonk Hotel is now fully booked! But don’t worry, there are many other options for accommodation nearby  

Here are 5 reasons why you don't want to miss the Conference

📣 The EHA Conference in Belgium is only a few weeks away!
Don’t miss out on this great opportunity to learn about HD care and treatment and how to cope with living with HD. Get ready for a variety of social and physical activities to get to know new people, learn and enjoy being part of a global community 💜 

Good news from UniQure

The treatment tested in the AMT130 trial is well tolerated and Patients treated with AMT-130 show preserved function compared to when they started in the trial (baseline) and clinical benefits relative to the natural history of the disease. These are some of the results announced by UniQure on June 21st.

In essence, this means that there are signs that the treatment works and slow down the progression of the disease. #UniQure is re-encouraged by the results and plans to continue and extend the program 🙌

💬 “I am so happy about this announcement. We need good news and we need to stay hopeful. Still, there is a lot of work ahead and we don’t have any conclusive results yet, but promising signs are promising!” – says Astri Arnesen, President of EHA. 

EFNA has issued a statement on the revision of the EU Pharmaceutical Strategy

The revision is crucial for addressing the unmet needs in neurological conditions, which require significant research and development. This strategy aims to foster an environment conducive to advancements in neurological treatments, ensuring patient benefits remain central.

 Some of our key points include addressing gender disparities, promoting the use of real-world evidence, and increasing transparency in pharmaceutical R&D costs.

Huntington Disease Days in Slovakia gathered more than 120 people!

The Slovak Huntington Association in collaboration with the Agel Hospital Zvolen arranged the first ever Huntington conference in Slovakia with 120 people from Slovakia, Czech Republic, Germany and Ukraine attending the 2 day meeting at the end of May.

The conference attracted both health care professionals and family members and the program had sessions regarding many of the different aspects of HD.

The President of the Slovak HD association, Vladimir Vaclavik and co-organizer Dr. Ján Necpál were very happy with the meeting which attracted also a lot of media attention.

NEWSLETTER: EHA Conference 2023 in Belgium

On Wednesday, June 7th we launch our EHA Newsletter with all the information about the conference, such as the agenda, the speakers, the accommodation and how to get to Blankenberge (Belgium).

Don’t forget to register to receive the 2 Newsletters we send every year with updates of our work and ongoing projects.

The agenda and speakers for the EHA Conference 2023 in Belgium

🙌 The European Huntington Association is excited to share the Conference agenda and the speakers, as well as all the details of each session and activity.

From sessions about HD clinical trial updates to activities like Interactive music therapy and Qigong, the conference offers great opportunities to learn about HD care and support, ongoing and upcoming HD trials and self-care activities. Watch this video to learn all about the agenda.

Social Media takeover days! May Awareness Month 2023

During the month of May, the European Huntington Association and the International Huntington Association started the social media takeover days! A safe space for the HD community to raise their voices about important topics, such as participating in HD initiatives, some coping strategies, and their own accomplishments.

💜 We want to thank to everyone involved in this campaign: Dimitri, Jenna, Erin, Tess, Tatiana, Charlie, and Ashley.
If you missed the takeover days, here are the most inspiring moments in this video.

Building Awareness & Driving Action: Making Neurology A Public Health Priority

EFNA and EAN are delighted to welcome you to a live-streamed event of the Brain Health & Neurological Conditions MEP Interest Group on the 23rd of May, 2023.

The topic of the event is building awareness & driving action by making neurology a public health priority. Your attendance and support are greatly appreciated.


📅 Tuesday, 23rd May, 2023
🕗 8:00am – 10:00am CET

WEBINAR VIDEO 🟢 PROOF-HD study good and less good news

On April 25th, Prilenia announced results from the PROOF-HD clinical trial for Huntington’s Disease. 🤔 Some of the participants showed significant benefits from the Pridopidine drug, while others did not benefit at all.

The European Huntington Association, in collaboration with #Prilenia, 💻 organized a Webinar to talk about the preliminary study results from the phase 3 PROOF-HD study and what they mean.

🗣️ Listen to Dr Michael Hayden (founder and CEO of Prilenia), Dr Ralf Reilman (Principal Investigator for PROOF-HD in Europe) and Dr. Andrew Feigin (Chair at The Huntington Study Group) explaining the results and indicating further steps. 

UPCOMING WEBINAR: PROOF-HD study good and less good news. What does the mixed results mean?

After reading the results of PROOF-HD study announced yesterday by Prilenia, 🤔 we believe we need to better understand these mixed results and what do they mean.
This is why the European Huntington Association, in collaboration with Prilenia, organised a Webinar on 🕐 Friday May 5th at 5:00pm CET.

🔬 The Phase 3 #PROOFHD clinical study evaluated the safety and efficacy of pridopidine in around 500 participants with Huntington’s disease (HD). 🗣️ Dr Michael Hayden, founder and CEO of #Prilenia will explain the results and indicate further steps.

Prilenia announce results from the PROOF-HD study

Prilenia announce results from the PROOF-HD study: Promising, but mixed results!
Some of the participants showed significant benefits from the Pridopidine drug, while others did not benefit at all. This is promising because, for the first time, we have a drug that demonstrates effect on disease progression, cognitive and motor symptoms.

– This is a wonderful step forward, says Astri Arnesen, President of EHA. – Nevertheless, the fact that not all the participants who received the treatment had the positive effect, is also somehow disappointing.

HDYO launches an online survey to understand how the HD Community Seeks Support

Who Can Participate? This is a global study for people at least 18 years and older, anyone who is impacted by HD (this includes people directly affected and also those who love someone affected: Gene negative, care partner, friend, and professionals).

This is the first in a series of anonymous surveys to better understand different aspects of the community’s lives as they continue their journey with HD. This survey will help HDYO develop and improve their programs to serve young people globally, and also share the findings and results with partners.

New HD-CAB Adboard with Annexon Biosciences

🙌 HD-CAB is happy that we collaborated with Huntington Study Group (HSG) to set up an advisory board for Annexon.

🌎 HD-CAB brings the personal experience of living with HD, the HSG brings clinical trial operational expertise and Annexon the science and clinical trial expertise. This trade is truly strong and we believe the collaboration will ensure high quality and good efficacy in the upcoming Annexon trial.

🗣️ “We look forward to further collaboration with both Annexon and HSG in the future” says Astri Arnesen from EHA, Jenna Heilman from HDYO and Svein Olaf Olsen from IHA

HDYO Congress photos!

The European Huntington Association, in collaboration with Novartis, organized a Webinar to talk about the lessons learned from VIBRANT-HD study. The webinar speakers included VIBRANT-HD clinical site investigator and Steering Committee member, Bernhart Landwehrmeyer, Medical lead for the branaplam program, Dr. Harry Ramos, and Clinical program head for the branaplam program, Dr. Beth Borowsky.

WEBINAR VIDEO AVAILABLE: Novartis Discusses the VIBRANT-HD Trial

The European Huntington Association, in collaboration with Novartis, organized a Webinar to talk about the lessons learned from VIBRANT-HD study. The webinar speakers included VIBRANT-HD clinical site investigator and Steering Committee member, Bernhart Landwehrmeyer, Medical lead for the branaplam program, Dr. Harry Ramos, and Clinical program head for the branaplam program, Dr. Beth Borowsky.

JOIN-HD: A platform for Juvenile HD

JOIN-HD is a worldwide registry for families affected by Juvenile onset Huntington’s Disease (JoHD), which aims to shed light on this diagnosis, bring together those impacted by JoHD, increase awareness and knowledge about this condition, facilitate research and help advocate for better care.

Juvenile onset Huntington’s Disease is diagnosed when a 20-year-old person or younger develops unequivocal HD symptoms.

Read the full article here

WEBINAR VIDEO AVAILABLE: Novartis Discusses the VIBRANT-HD Trial

The European Huntington Association, in collaboration with Novartis, organized a Webinar to talk about the lessons learned from VIBRANT-HD study. The webinar speakers included VIBRANT-HD clinical site investigator and Steering Committee member, Bernhart Landwehrmeyer, Medical lead for the branaplam program, Dr. Harry Ramos, and Clinical program head for the branaplam program, Dr. Beth Borowsky.

Watch the video here

Join us for Rare Disease Day!

February 28th is Rare Disease Day, when the rare community comes
together, finds support and raise awareness for rare diseases across the globe.

This year we want you to join the #LightUpForRare campaign. To participate you just need to send us a photo with some coloured lights or candles (yout don’t need to appear on the photo if you don’t like to).

Send the photo before February 27th to: participate@eurohuntington.org

WEBINAR: Updates on the Select HD clinical trial on Huntington's Disease

The European Huntington Association, in collaboration with Wave, organized a Webinar on the updates of Select-HD clinical trial for Huntington’s disease.

Dr. Ralf Reilmann, founder of the George-Huntington Institute in Muenster, presented an overview of the SELECT-HD trial, which is looking at the safety of the investigational molecule called WVE-003. After his presentation, we had a Q&A session with Danlin Xu, HD Medical Director at Wave, and Marissa Volpe, HD Program Lead at Wave.

Watch the video here

Updates from Roche on Phase II Generation HD2 study

For those of you who were unable to attend the Webinar on the Phase II Generation HD2 study, here is the complete video.

👥 In this video, you will be able to listen to the updates on this study from the Clinical Science Leader from #Roche, Dr. Peter McColgan, and the Principal Investigator in Madrid (Spain), Dr. José Luis López-Sendón.

Watch the video here

HD-CAB One Global Voice

We celebrate the first year of the HD-CAB initiative, a partnership between the European Huntington, HDYO (Huntington’s Disease Youth Organisation) and the International Huntington Association

🙌 The main mission of the HD-CAB (Community Advisory Board) is to represent the voice of the global HD community and provide the unique expertise of living with HD to stakeholders relevant for therapeutic development.

Watch the video here

The Worm Lab during the Second Moving Forward meeting in Spain

Listen to Rafael Vázquez-Manrique, Senior Researcher at Health Institute La Fe of Valencia (Spain), about their research efforts in Huntington’s Disease at the Worm Lab.

Watch the video here

Webinar on the updates of Wave's trial SELECT-HD

After Wave’s positive announcements last September on the Phase 1/2 SELECT-HD trial, we are excited to learn more about the last updates of the study in our upcoming webinar next Thursday 26th, January.

Dr. Ralf Reilmann, founder of the George-Huntington Institute in Muenster, will be presenting an overview of the SELECT-HD trial, which is looking at the safety of the investigational molecule called WVE-003. According to Dr Reilmann “preliminary data suggest WVE-003 is working as intended, reducing the levels of mutant huntingtin while avoiding targeting the healthy protein”.

There will be time for comments and questions after Dr Reilmann’s presentation, in our Q&A session leaded by Danlin Xu, HD Medical Director at Wave, and Marissa Volpe, HD Program Lead at Wave.

📆 January 26th, 2023
🕐 6pm CET

Register now for the webinar

Updates from Roche on Phase II Generation HD2 study

The GENERATION HD2 clinical trial is just about to start recruiting participants in the first of a total of 15 countries and 9 of them are in Europe: Denmark, France, Germany, UK, Poland, Italy, Spain, Portugal and Switzerland. The study aims to enroll 360 participants and evaluate the safety of the investigational drug tominersen in people with early manifest HD.

👥 The Clinical Science Leader from Roche, Dr. Peter McColgan, and the Principal Investigator in Madrid (Spain), Dr. José Luis López-Sendón, will provide the latest updates of the study and their research efforts in HD. After the presentations, there will be time for comments and questions.

📆 January 19th, 2023
🕐 6-7pm CET

Register now for the webinar

Are you ready for a challenge? SOM3355 Trial

We would greatly appreciate the help of the European HD community in making a joint action in the recruitment of the SOM3355 trial. Efficient and timely recruitment equals faster results. Currently in Europe the only course of treatment for chorea is Tetrabenazine which has several negative side effects and limited efficacy for most patients. SOM3355, as a drug has been used for many years for a different disease. Positive results can hopefully lead to faster approval.

Learn more about it

THE 'VOICE OF HD' NEWSLETTER IS OUT NOW!

For the 2022 Christmas Newsletter edition, we speak about the Moving Forward new project resources, the HD communication group campaigns, the upcoming EHA Conference in Belgium 2023 and our special new challenge for the HD community! Find out more here

The European Huntington Association send a Newsletter every 6 months with updates on our work done so far and our ongoing projects. Subscribe here now

Status of the Novartis study: Vibrant-HD

Still the study brings us some very good news as the drug did reduce the levels of mutant (sick) huntingtin in the spinal fluid collected from the participants.  This is groundbreaking achievement as the drug is administered orally (through the mouth). Nevertheless, reducing huntingtin in a safe way seems to be a challenging process.  

UPCOMING WEBINAR: Access to health care services and support for HD patients in Europe

Earlier this year we conducted an online survey trying to draw the European map of access to support and care for HD families and use this to advocate for good access for everyone affected by HD. 👏 We are proud to share that this survey was filled up by 800 HD family members and healthcare professionals from 31 countries.


The survey results will be presented in a Webinar by Filipa Júlio, on Thursday December 8 at 3 – 4 pm CET. After her presentation, we will open a Q&A and discussion session about what the results mean and how to best make use of them.

🗓️ Thursday, December 8 2022
🕘 3 – 4pm CET

Register now for the webinar here

Moving Forward new section: The Bookshelf

The Moving Forward team is happy to announce a new feature in the Moving Forward webpage, the Bookshelf. The team has compiled many interesting books of different genres, all of them related to Huntington’s Disease (HD). Here you can find a comprehensive list with a summary of each book and additional information about where to buy or read it online 📖

 🎯 Since one of the main goals of Moving Forward is to increase the health literacy and provide reliable information to the HD community, the project team thought it would be interesting to have a new section dedicated to all you book lovers out there.

Take a look at our international bookshelf

Meet our new EHA Board member - Rob Haselberg

“First of all; ever since my first EHA meeting I felt so welcome and accepted. Who does not want to be part of that? Secondly, HD connects us all; it does not stop at borders. And I have noticed that if we work together we can make life easier for so many people. The flip side of that is that there are many people that do not yet receive the amount of information, support, and care they could get” – Said Rob.

Coping with Symptoms of Huntington's Disease

We loved Tess Persson open up story about Huntington’s Disease, the importance of our mental health and the value of the family.
 
Watch her video presentation at the Bologna EHDN 2022 Conference.

Our first day at the Huntington Study Group Meeting in Tampa, Florida

The 29th annual meeting of the Huntington Study Group started today with two exciting clinical trial round-ups. We learnt about the clinical trial updates from PTC Therapeutics, Roche, UniQure, Wave, Annexon, Neurocrine Biosciences, Prilenia, and Sage Therapeutics.

Read the full article here

UniQure resume the patient enrollment at the higher dose for AMT-130 clinical trial

📣 UniQure announce that they proceed recruitment in the high-dose group that was paused earlier this year.
Because of some adverse events, the company decided to pause recruitment of participants to the group that receive the highest of 2 different doses in their AMT-130 trial.
“This is great news and very encouraging” – says Astri Arnesen, president of EHA.
 

The story of Oda Felicia and ‘The Huntington Chorea project’

We are delighted to introduce Oda Felicia Abdelmaguid to the community. She is a Norwegian young woman who created her own personal project called “The Huntington Chorea Project“. This project is a collection of feelings in whatever shapeOda felt them during these years when the sorrow became a friend and the only thing steady in her sudden world of insecurity.

Read the full article here

WEBINAR on the 'PTC518' clinical trial updates

The European Huntington Association, in collaboration with PTC Therapeutics, organized a Webinar on the progress of their Phase 2 clinical trial which has just started here in Europe.

The trial and treatment approach was presented by professor Sarah Tabrizi from University College London. She explained to us everything about the compound ‘PTC518’. After the presentation, Brian Beers, Global Project Leader and Amy-Lee Bredlau, Sr Dir Clinical Development from PTC, took part in the discussion. 

Watch the full video here

Meeting with the ERN-RND 2022

The network partners met in Tuebingen in Germany at the end of September for the annual meeting.  Since the previous face-to-face meeting the network has got a lot of new partnering clinics.  From the initial 31, there is now 68 clinics from 24 countries. 48 of the clinics follow-up HD patients.  

Read the full article here

Poster exhibition - Some insights from the patient Organization projects

Between the Sessions at the EHDN 2022 Conference in Bologna, we all had the opportunity to see the amazing posters with HD topics designed by the different Associations, universities and professionals.
The European Huntington Association was really impressed by the hard work of the patient organizations and had the chance to speak with some of them to know more about their posters and projects
 

EHDN 2022 I Update on clinical trials

This year the EHDN 2022 Plenary Meeting was in Bologna, and we had the opportunity to go in person and learn about the latest updates on the current clinical trials.

Earlier in the year we were all hit by the suspended dosing in the VIBRANT- HD trial of Novartis. However, this year’s  conference has demonstrated again that the hard work continues and there is some exciting progress that was presented in some of plenary sessions at the conference. 

Read the full article here

EHDN 2022 I How does the HD community live an International Conference?

During the EHDN 2022 Conference in Bologna, we decided to ask some attendees about their whole experience and if they recommend this oportunity to the whole HD community 🙌
 
“HD Conferences it’s the best learning opportunity that you can get, you can ask questions, network with people and, most importantly, you will never feel alone” – Says Kyra Ashley Clarke 👏
 
“Being at the EHDN is empowering” – Says Paul de Sousa 💪
 
💜 We want to thank everyone who participated and volunteered to be in our videos during the Conference! Our purpose is to inspire people and raise also awareness for ➡️ our upcoming EHA Conference 2023 in Belgium.
 

Next EHA Conference in Belgium 2023!

On behalf of the EHA Board, we kindly invite you to join us on our next adventure in Blankenberge, Belgium.

The program for the upcoming EHA Conference will be open to HD family members and health care professionals.

Read the full flyer here

Good news from Wave! Press Release (20th September)

The Select-HD is showing good achievements. 8 people have received the drug and the results shown so far is that after 85 days their levels of mutant huntingtin is reduced with 22 %. And this lowering is happening after just one injection of the drug.
🙌 This is encouraging and gives Wave good grounds to adjust and continue the trial! Select-HD is particularly interesting because the treatment only goes for the mutant Huntingtin and seems to leave the healthy Huntingtin untouched.

You can read the full press release here

Prilenia Phase 3 Trial with Pridopidine – Why is it Different?

For all those who have been following Huntington’s disease research for some time, Pridopidine is an “old acquaintance”.

To date, several studies have been conducted with this drug, looking closely to its effect on dopamine. Although they have helped us to confirm the safety and good tolerability of pridopidine, none of these trials has been completely successful.

Read the full article here

Wave Life Sciences announces a new active site in Italy for the 'Select HD' clinical trial

The study is a phase 1/2 and will look at the safety and how participants tolerate a new antisense oligonucleotide (ASO) in early-stage disease, with a drug called ‘WVE-003’.

The new facility that is recruiting is at the 📍 Centro Ricerche Cliniche Di Verona, and the principal investigator is 👤 Tomasso Bovi, MD.

Learn more about the trial and the other facilities open in Europe here

PTC Therapeutics: 'PTC518' Phase 2 Clinical Trial updates

After these hard weeks for the Huntington’s Disease Community, we start September with renewed strength and hope!

The European Huntington Association in collaboration with PTC Therapeutics, announces an Online Webinar on the progress of their Phase 2 clinical trial which is just about starting up here in Europe.

The trial and treatment approach will be presented by professor Sarah Tabrizi from University College London.  She will tell us more about the compound ‘PTC518’, a small molecule developed to reduce the production of mutated huntingtin (mHtt)   As most of you know mHtt leads to the injury and death of neurons, which again results in the disease progression.  After Tabrizi’s presentation there will be time for questions and comments and discussion.  For this part of the webinar Brian Beers, Global Project Leader and Amy-Lee Bredlau, Sr Dir Clinical Development from PTC will be participating.

We hope you will use the opportunity to learn about this exciting trial and approach to treat Huntington’s Disease! 

Register here

Novartis community letter: Dosing suspended in VIBRANT-HD trial of branaplam

Another set-back for HD research was announced by Novartis on August 8. The Vibrant-HD trial has stopped dosing due to the fact that some of the trial participants have exeperienced negative effects in the nerve system outside the brain.

Novartis has provided a community letter regarding Vibrant HD clinical trial updates. 

Read the full article here

Online talk with Dimitri Poffé - Thursday 14 July at 19:00 CET

Join the Moving Forward team on Thursday 14 July at 19:00 h (CET) for a talk with Dimitri Poffé 🚴, a young French adventurer who is cycling across Latin America to raise awareness about Huntington’s Disease.
 
This conversation will be held entirely in Spanish via Zoom, and you can register here
 
More information about Dimitri’s journey in this article

Participate in the Photo Exhibition at the EHDN Plenary Meeting!

We need your photos and creativity this year!

Anybody interested in the topic – patients, family members, HD professionals, family friends and the general public – is invited to submit their photos illustrating the topic of “Abandonment: From Landscapes to Mindscapes”. You can submit more than one image (maximum of 2) if you wish.

Read the full article here

EHDN2022 PLENARY MEETING

September 16th – 18th, 2022 in Bologna

Topics presented during the EHDN2022 Plenary Meeting will contain reports on recent advances in HD research and care. Aside from participating in the plenary and other parallel sessions, attendees will also have the opportunity to meet experts in the field of HD studies in more informal settings.

See our program

Register for the Conference here

 

Adoption of the Global Action Plan on Epilepsy and other Neurological Disorders

We are delighted to support today’s announcement of the Global Action Plan on #Epilepsy & Neurological Disorders at the World Health Assembly.

The European Federation of Neurological Associations – EFNA, along with members of the OneNeurology partnership which EFNA co-founded, celebrates a major milestone for all those affected by neurological disorders today, with the adoption of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (GAP) at this week’s 75th World Health Assembly.

Read the full article here

The voice of the Huntington's Disease community

🌎 To end Huntington’s Disease May Awareness Month 2022, we asked HD patients, family members and professionals some questions in order to raise awareness:
 
1️⃣ How did HD change your life?
2️⃣ What is most challenging?
3️⃣ What kind of support would help you?
 
Watch this emotional video to understand how important and unique is the voice of the Huntington’s Disease community. We are stronger and unstoppable together.
 

Watch the full video here

EHDN2022 PLENARY MEETING: September 16th – 18th, 2022 in Bologna

Topics presented during the EHDN2022 Plenary Meeting will contain reports on recent advances in HD research (in both basic and clinical sciences). Aside from participating in the plenary and other parallel sessions, attendees will also have the opportunity to meet experts in the field of HD studies in more informal settings.

In addition, the program also includes evening activities, ranging from informal meetings with industry experts to podium talks, movie night and a “Networking evening”.

See our program

Register for the Conference here

 

Participate in the Moving Forward Forum!

📣 Your voice can make a difference in the HD community!
The Moving Forward team has created a Forum, an online platform with several interesting topics about Huntington’s Disease.
 
Visitors will be able to ask questions, share experiences and connect with others:
  • This is your moment to speak and be heard.
  • This is your moment to learn from others and benefit from their experience.
  • This is the moment to use your voice!
 
Please share your thoughts, experiences & comments about this and other HD topics.
 

Video of Prilenia's Webinar "All you need to know about PROOF-HD”

🙌 If you missed the Webinar “All you need to know about PROOF-HD” hosted by Prilenia on May 4th, here is the full video.

May Awareness Month 2022 started with some updates from Michael Hayden, Andrew Feigin, Ralf Reilman and Anne Rosser about the Phase 3 trial where the investigative drug pridopidine is evaluated on HD patients. Close to 500 participants in North America and Europe are given either the active drug or placebo for more than one year.

The recruitment went fast and smooth and we can expect to have the first results published sometime first half of 2023. The speakers told us about the background and mechanisms of Pridopidine, status for the trial and potential next steps. 

Watch the full video here

HELP US MAP HD PATIENTS AND FAMILIES ACCESS TO SUPPORT AND CARE 🤝

We know that many HD families and patients are struggling to get the care and support they need. But we don’t know where the gaps are. How is this for you? Do you get what you need and is it easy to access?
🌍 The European Huntington Association (EHA) has been working on an online survey trying to draw the European map of access to support and care for HD families and use this to advocate for good access for everyone affected by HD

It will take you about 10 minutes to respond. ✍️ We have the survey available in 20 languages.

Read the full article here

 

Acting out disease: How patient Organizations Shaped Modern Medicine

On Thursday 21 April at 4pm, Swedish historian Ylva Söderfeldt will give a free (online) lecture on how patient organisations have contributed to the development of modern medicine.

The lecture will take place in English, but a Dutch simultaneous interpretation will be offered. More information about the lecture

Register here for the Webinar

HD Trial Finder - Watch the new video presentation of the new Webpage updates

HDTrialFinder is a project developed by the European Huntington Association (EHA). This platform is the first and only where all European Huntington’s disease trials and studies are presented in plain language 🗣️
 
📍 Our goal is to give correct, plain and relevant information about Huntington trials. We also provide contact information, so you know whom to contact if you want to express interest to join a trial or if you have further questions.
 
EHA created this video to present our new website updates and features, like the new HD Trial Finder map 🌍 to make it easier for you to navigate.
 

EHA Board meeting in Bolognia, April 3rd 2022

The European Huntington Association board met in Bologna (Italy) this weekend. So wonderful to meet and prepare for the EHA business meeting and EHDN conference that will be in Bologna this September. Hope you all will join us there!

The EHA is devasted by the Russian attack on Ukraine and all suffering this brings to people

The HD community is known for it’s warm and inclusive heart and we want the Ukrainians to know we are here and can help guide them to get in touch with experts if they suffer from Huntington’s Disease, says Astri Arnesen President of EHA.  The HD associations in Europe will do their best to help you if you contact them here.

The Polish association has already helped a few Ukrainian HD patients fleeing the war and the President Danuta Lis is ready to help more. 

Read the full article here

Share your experience of seeking a diagnosis for your rare disease!

Take 20 minutes to complete the new #RareBarometer survey on the journey to diagnosis for people living with a rare disease!


How long did it take for your rare disease to be diagnosed? Are you still seeking a diagnosis for your rare disease?This survey is open to people living with a rare disease and their family members from any country in the world.


👉 Survey available here in 26 languages

UniQure announced the completion of patient enrollment in the first two cohorts of its Clinical trial AMT-130 for HD

🗣️ “We are very pleased to have completed the enrollment of the first 26 patients in this ongoing clinical trial. It’s a major milestone for the trial and an important achievement for our clinical operations team. Our investigators have done an exceptional job in enrolling on this important study. We look forward to providing a clinical update in the second quarter of this year from the 12-month interim analysis of the 10 patients in the first cohort, including safety, mutant HTT protein (mHTT) and neurofilament light chain (NfL) data. We also remain on track with the enrollment of our European open-label clinical trial of AMT-130 and plan to begin a third patient cohort in the U.S. to explore an improved administration procedure.”- stated Ricardo Dolmetsch, Ph.D., president of research and development.
 
🗣️ “I am very happy with all progress and milestones reached in this study and I look forward to hear about the first interim results. Hopefully we will know already in a few months’ time whether mutant huntingtin is lowered in the patients that have received the treatment.” – Says Astri Arnesen, President EHA.
 

HD-CAB Training session 💻 in European Medicines Agency Processes for Marketing Authorisation and Patient Involvement

Maria Mavris presented this online training, she explained what’s involved in granting marketing authorization in Europe and how the agency gets patients involved 🌍
 
Although Maria’s focused on Europe, she also talked about the US (FDA) process so it was valuable learning for all of us, given that most countries look to either the EMA or FDA when they consider marketing authorization.
 

Assesing diagnosis and care pathways of people living with neurological disorders in Europe

Despite the higher prevalence among women of many neurological disorders (e.g. MS, migraine, Alzheimer’s) gender stereotypes can have a negative impact, leading to underdiagnosis and delayed treatment.


Take EFNA’s survey and help to identify the challenges facing all affected, either as patients or caregivers, from diagnosis to care pathway.

Take the survey here

Huntington's disease is everywhere, in every country and region worldwide 🌍

February 28th was Rare Disease Day 2022.
 
Each year we unite in a shared mission to raise awareness for rare diseases such as Huntington’s Disease (HD). This year we wanted to show everyone that HD is everywhere worldwide 🌍
 
💙 We want to thank everyone who made this video possible and also thank every Association that participated with us in raising awareness for this #RareDiseaseDay campaign.
 

Today is Rare Disease Day 2022! 🙌

As a part of this big community, we are trying to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers 🤝 


💜 And we also have our own community, the Huntington Disease community, in which we take care of each other. “We bring different strengths, but we are connected to the same stem”.


We also wanted to thank you for all your support and participation during this week. We collected all your incredible 📷 photos during this week and we are going to create a video sharing that Huntington Disease is everywhere, in every country 🌎

Let's raise some awareness for our community!

This year we need you more than ever! we want to raise awareness for Huntington Disease through social media, by using our filter for stories in Instagram or Facebook.

Here you can find the links for both social networks filter options that you can easily use and share:

Only 7 days away from Rare Disease Day 2022! 🙌

Each year we unite in a shared mission to raise awareness for rare diseases such as Huntington Disease. 🤝 This year we need you more than ever! You can help us by sharing our posts, creating your own ones and using the #RareDiseaseDay

📷 We want you to participate and share a picture of you showing that Huntington’s is everywhere. If you don’t want to appear in the picture you can also share a picture expressing your true colours 🎨, with a beautiful landscape, a flower 🌼 or a monument itself.

You only need to post the picture, tag us (@EuroHuntington) and add the 📍 city where you took the picture.

Welcome to our basic online training on Huntington's disease

The Swedish Huntington Association has thanks to the funding from Allmänna Arvsfonden in Sweden been able to produce an online training course about Huntington’s Disease (HD) and how to provide best care. HD is a complex disease with a great variety of symptoms and this training resource will help you understand more about how to meet the needs of the patients throughout the course of the disease.

Learn more here

First European HD patients has been dosed with Uniqure’s gene therapy

First week of February another exciting step in HD research was taken, as the first two European patients were given Uniqure’s gene therapy in the ongoing Phase I/II trial.  The drug is named AMT-130.   Uniqure started the trial in the United States last year and is happy to be able to dose the first European participants as it has taken some time to identify the right participants and prepare the brain surgery this treatment requires. 

 

Read more here

JOIN-HD - Juvenile onset HD Global Registry

👥 We are happy to announce that JOIN-HD, the Juvenile onset HD Global Registry, will be open for Stage 1: Open Enrollment starting tomorrow, February 4th.
JOIN-HD is a global registry that collects experiences from both young people who have JoHD and their caregivers. All the information people add to the registry helps us understand more about JoHD. This will allow us to advocate for improvements to care, research and awareness.
 
🤝 We hope JOIN-HD will be a platform that will encourage other scientists and clinicians to carry out much needed research into this devasting disease.
 

More information here

Online Education for professional care givers

This is an online training for professional care givers, aimed at those caring for people with Huntington’s disease.
 
The Swedish Huntington’s Association has been working for several years to develop a training programme for carers of people with Huntington’s disease. Thanks to financial support from the Swedish National Inheritance Fund, a web-based training course has been developed.
 

Register here

Roche Webinar (24th January) recording available

After several months digging into all the information collected in the Generation HD1 trial Roche is ready tell us about their findings in a webinar organized by EHA in collaboration with Roche and EHDN. Lauren Boak, PhD and Peter McColgan, MD, PhD from Roche will present the key findings from the Generation HD1 trial and the Tominersen program.

Prof Anne Rosser, chair of EHDN, is participating in the following Q&A session and will help us understand the value of the findings and how we can make use of them for future work.

Watch the full video here

Vibrant HD clinical trial dosed first participant in January 2022!

Novartis managed to stick to the planned initiation of the Phase 2 trial and dosed the first participant just as we entered into 2022.  To learn more about the project, Tina Leggett, on behalf of the European Huntington Association, travelled to the Novartis Campus in Switzerland. She interviewed Dimitri Papanicolaou, Jang Ho-Cha and Beth Borowsky, to learn more about Vibrant HD, a clinical trial Novartis is conducting where they test a drug named Branaplam.

Watch the full video here

New Webinar February 1st 2022, 3-4pm CET

Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). The speaker works as a research physician and PhD-candidate at the Neurology and Human Genetics department of the Leiden University Medical Center.

Register here

A new dawn for Tominersen

Some mornings are better than others and Tuesday January 18th was definitely one of the really good ones as I woke up to a beautiful sunrise and the news that Roche has decided to do another Phase II trial with Tominersen. 

Read the full article here

WEBINAR: Generation HD1 - what does the data tell us?

After several months digging into all the information collected in the Generation HD1 trial Roche is ready tell us about their findings in a webinar organized by EHA in collaboration with Roche and EHDN.

Read the full article here

Online presenation on the Roche tominersen programme

This online meeting, hosted by EHDN, is geared towards a professional audience.

The meeting will include key findings from the Phase III GENERATION HD1 trial, followed by Q&A, then a panel discussion with recognised experts in the field of HD. The meeting will last approximately 90 minutes.

Register here

Happy New Year 2022

The Moving Forward Team: Filipa Júlio, Ruth Blanco and Zaynab Umakhanova, wants to wish you happy holidays and a joyful new year!

Watch the video here

A new dawn for neurological diseases on the horizon

Our voice on behalf of people with neurological diseases (ND) has been heard!  EU has decided to include ND on the list of health care priorities. This paves the way for a better future also for Huntington patients. 

 

LET US TALK! Online course "Communication Skills for Healthcare Professionals"

For the first time in Russia, there will be an international online course for healthcare professionals organized by the European Huntington Association (EHA) – Moving Forward Project. Top experts from different countries will meet on one online platform to share their knowledge and experience in treating and caring for people with a rare genetic neurological disease – Huntington’s disease (HD).

Read the full article here

The 3rd ERN-RND Winter School in collaboration with EPNS is dedicated to rehabilitation issues in patients with symptoms of a rare neurological disease

It is an opportunity for young neurologists/residents who are interested in rare neurological disorders to receive in-depth training from internationally-recognized rare neurological disease experts. 🤝
 
All participants are invited to contribute to the Winter school programme by submitting an appropriate case. The most meaningful/adapted ones will be attributed to an oral discussion session. This will give the participants the possibility to exchange their ideas and discuss difficult cases
 
𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐚𝐭𝐢𝐨𝐧 𝐢𝐬 𝐩𝐨𝐬𝐬𝐢𝐛𝐥𝐞 𝐮𝐧𝐭𝐢𝐥 𝟏𝟐 𝐃𝐞𝐜𝐞𝐦𝐛𝐞𝐫 𝟐𝟎𝟐𝟏

The first Moving Forward face-to-face meeting after Covid!

The landing of Moving Forward in Spain has been brewing for several months. However, several circumstances have made it impossible for the team members to have direct contact, and so they always connected remotely, via e-mails and videocalls. Until now.
 

The Healthe-rnd consortium was finally able to meet again face-to-face in Prague.

Most of the partners were able to attend despite the ongoing restrictions due to the pandemic.  The ones who couldn’t make it to Prague attended on Zoom. It was great to see each other again and also meet new faces as there have been additional people brought into work in the project.

Read the full article here

Take the Survey before December 15th!

Moving Forward starts its activity in Spain, and we need you! We have created an online survey to find out the needs, concerns and desires of the Spanish community regarding their participation in research.

Read the full article here

HD-CAB meeting with PTC

HD-CAB had the first advisory board with PTC the 3rd of November.
“It was a very good experience for both our team and PTC” Astri Arnesen, chair for HD-CAB says.
 
“I am impressed with how the team members in a couple of hours managed to paint more or less the entire picture of what it’s like to live with HD” Sian O’ Neill, Senior Director, Patient Engagement in PTC stated after the meeting.
Thank you again for the opportunity to participate in the 1st HD-CAB. The CAB team has pushed the PTC team into overdrive! The real and honest sharing of the reality of HD has generated a lot of questions and dare I say shifted the thought process for our team.
 
We look forward to new advisory boards in 2022!

Moving Forward in Russia and Spain

Our recent project “MOVING FORWARD” is working on new translations! 🌎
 
The Webpage is now available in English and Russian, and soon will be translated into Spanish, French and Polish.
 
This project wants to hear and engage those traditionally less involved in research – persons at risk for HD and persons with premanifest HD. We believe that these groups have different needs, worries and wishes regarding research participation compared to people in more advanced HD stages.
 
 
“𝐌𝐨𝐯𝐢𝐧𝐠 𝐅𝐨𝐫𝐰𝐚𝐫𝐝 – 𝐓𝐨𝐰𝐚𝐫𝐝 𝐚 𝐅𝐮𝐭𝐮𝐫𝐞 𝐰𝐢𝐭𝐡 𝐄𝐟𝐟𝐞𝐜𝐭𝐢𝐯𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞-𝐌𝐨𝐝𝐢𝐟𝐲𝐢𝐧𝐠 𝐓𝐡𝐞𝐫𝐚𝐩𝐢𝐞𝐬 𝐟𝐨𝐫 𝐇𝐮𝐧𝐭𝐢𝐧𝐠𝐭𝐨𝐧’𝐬 𝐃𝐢𝐬𝐞𝐚𝐬𝐞”

HD-CAB new video

😊 Listen to the HD-CAB Coalition of partners talking about their first steps working together, their reasons to join this initiative and what do they want to achieve in HD-CAB 🤝 
 
In this video presentation, we have the participation of our HD-CAB Management Board; Astri Arnesen from EHA, Svein Olaf Olsen from IHA and Hayley Hubberstey from HDYO.
 
🗣 𝐎𝐧𝐞 𝐕𝐨𝐢𝐜𝐞 𝟒 𝐇𝐃

HD-CAB Website announcement!

The European Huntington Association (EHA), the International Huntington Association (IHA) and the Huntington’s Disease Youth Organisation (HDYO) are excited to officially announce the new website for this project, called HD-CAB. As a coalition of partners, their main mission is to represent the voice of the global HD community and provide HD community experience to regulators, industry, researchers and governing bodies. 

You visit the new site here

Parkinson’s and Huntington’s Clinical Trials - the Participant Experience

The International Network for Transplantation and Restoration (INTR) and Cure Parkinson’s are delighted to be hosting this free online event.
 
During this session, they would talk about clinical trials involving cell and gene therapies for people with Parkinson’s or Huntington’s disease. We are glad to say that one of the speakers and chairs will be Dina De Sousa from European Huntington Association.
 

EHA Board Meeting and General Assembly

The EHA Board members met in Amsterdam on September 24th and 25th, 2021. 

Watch here the full video

MDS-ES and EHDN Joint Online Course Series

The EHDN in collaboration with the International Parkinson and Movement Disorder Society is delighted to announce a virtual HD course series ➡ Huntington’s Disease: From Foundational Principles to Assessment and Treatment

🗣 The primary purpose of this program is to provide information on foundational principles, assessment and management of Huntington’s disease.

💻 Online Course
📆 During October 2021 (3 Friday slots- 8, 15 & 22 October)
☑️ Registration: Free

Find more information here

Article about EHDN Remote Conference

After attending the EHDN Conference of 9-11th September 2021, Astri Arnesen wrote an article that summarize all the new updates on the HD Clinical Trials. This are some encouraging news! 

Read the full article here

FIFTY PERCENT - A Short Documentary

This incredible film explores the tension around Lillian, the daughter of an HD positive mum, deciding whether to get tested (to find out if she also carries the HD mutation) or not. This is something particularly important for the new generations, given the incredible advances that have been made since 1993.

The documentary has been released this week and is available to watch for free here

KICK-OFF MEETING ONLINE FOR HD-CAB

The Team Members of HD-CAB (Community Advisory Board) had last Saturday 4th their first globally Webinar with different advocates and partners.

Learn more about HD-CAB initiative here

 

How “emotional brain” is affected early in HD

Our results demonstrate that parts of the brain that manage emotions, the so-called limbic system, is affected early in HD mutation carriers.  These changes may contribute to the development of psychiatric and cognitive symptoms.  In many cases these are the most troublesome symptoms for both patients and their close family.

Our findings show that it’s not only the nerve cells that are affected in HD, but also other kinds of cells, like oligodendrocytes which play a major role in facilitating the communication between different parts in the brain, explains principal investigator Åsa Petersèn. 

Read the full article here

EHA has written an article for the Journal of Personalized Medicine

The article “Perceptions about Research  Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association” has been published in the Journal of Personalized Medicine as part of the Special Issue The Many
Faces of Huntington Disease.
 

Survey for people with chronic diseases

As part of the European research consortium, IDEA-FAST is planning to conduct a large observational study with digital technology. The study is looking to develop new digital measures for fatigue and sleep disturbances for people with chronic diseases.Considering the importance of including patient voices in study designs a few minutes of your time would be highly appreciated.

To this aim, they would like to hear your opinion on how you think clinical studies using digital technologies should look like and to make sure the study is engaging and not too burdensome for participants with chronic diseases.

Take the survey: English, French, German, Spanish, Italien

Multidisciplinary Treatment and Care WG meeting

Marleen van Walsem, Astri Arnesen and Ruth Veenhuizen, the lead facilitators of this working group, invite you to join this Zoom meeting.

Please feel welcome if you are proud of your multidisciplinary teamwork or in case you dream of improving multidisciplinary collaboration for HD families. In this meeting, we want to get to know each other and learn from each other on treatment, support and care for HD families.

Register for the meeting here

Moving Forward Announcement!

The European Huntington Association is happy to announce the launch of the international project «Moving Forward» in Russia! The first city to present the project was Tomsk, which is situated in Syberia.

17 members of the HD families and several doctors-neurologists attended the interregional “School of Health”, organized by the center “Orphan People”.

Read the full article here

HD-CAB, OneVoice4HD Announcement

The European Huntington Association (EHA), the International Huntington Association (IHA) and the Huntington Disease Youth Organisation (HDYO) are excited to officially announce their new project, called HD-CAB. As a coalition of partners, their main mission is to represent the voice of the global HD community and provide HD community experience to regulators, industry, researchers and governing bodies.

Read here the full article

EFNA e-learning modules

The courses are video-based and divided into sections that can be watched independently at times that suit the viewer. Each module includes supporting notes and worksheets, as well as a the option to take a quiz on the content and receive a personalised certificate of completion.

More information here

EURORDIS High-level political forum 2021

Organised on the margins of the HLPF, the event is co-hosted by Spain, Qatar and Brazil – the Core Group of Member States promoting the call for a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families – together with the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS.

Register here for free

PROOF-HD reached 214 participants

PROOF-HD is a Phase 3, randomized, double-blind, placebo-controlled study evaluating the efficacy and safety of pridopidine in patients with early stage of Huntington Disease.

The recruitment still ongoing and the final number of participants needed is 480. You can find more information about this study and other ongoing trials in Europe on HD Trial Finder

This HD clinical trial will explore the safety, tolerability, and efficacy signals in 26 total patients with early manifest HD. “We are very pleased with the progress that we continue to make in this Phase 1-2 clinical trial and that we are now administering AMT-130 at the higher dose,” said Ricardo Dolmetsch, Ph.D., president of research  at uniQure.

Full article here

You are kindly invited to join the 1st Huntington’s Disease Meeting for the Arabic Countries, organised by the International Huntington Association 🧡This is the first in a series of educational events dealing with Huntington’s Disease and will take place via Zoom.

Register here for free

Scientists identify precisely how pridopidine works in models of Huntington’s disease.

Pridopidine is a drug developed to treat Huntington’s disease (HD) and now scientists have a clearer understanding of how it works in the body and brain.

Read the full article here

Positive for Huntington's - Yusuf Jamal Din story

The هنتنغتون بالعربى – Huntington’s Disease Arabia is a new initiative that has seen an incredible uptake from people across the region. It serves as a bridge between Arabic audiences and authoritative HD information.

Full Facebook post here

All four Huntington’s disease charities across the UK and Ireland are working together to raise awareness of the impact of Huntington’s disease, not just on individuals but on families too.

Explore the Living History wall

It’s time to make neurology a global public health priority
and the OneNeurology Initiative is aiming to do just that.

More info here

Watch part 1 – Adriano

Watch part 2 – Dimitri

Meet Adriando and Dimitri, two HD family members who raised money for Huntington’s Disease while walking and biking through the world.

Improving access to care and treatment for Huntington’s Disease patients and families

See our petition and sign here 

Today, only a minority of people affected by HD get the support and help they need.  But there are solutions to this problem – expertise and knowledge exists – we only need to provide better access to all patients. 

Life with HD comes in many flavours - alice wexler

Watch the full video here

During the webinar Annette

Listen to what the well known HD family member, academic and patient advocate from the US,  Alice Wechsler,  has to say about what life with HD can be like. 

Watch the full video here

In this Webinar, Vissia Viglietta will be speaking on behalf of WAVE. She would explain the results and all the good work they have been doing in improving from the updated on PRECISION-HD1 and PRECISION-HD2 medical trials. 

Watch the full video here

During this Webinar, Lauren Boak will be speaking about the preliminary analysis they have done of the data so far and what the next steps will be.

Watch the full video here

During the webinar Annette will talk more about how to manage oral health and demonstrate several tools that will make oral care easier in daily life. 

Join our Light
it up 4 HD!

How to take action:

  1. Light your house with purple or blue
  2. Take a picture
  3. Upload it on social media and add #LIGHTITUP4HD
  4. Tag us! @TheEuroHuntington

As you all remember in March the independent Data Monitoring Committee advised Roche to halt dosing of the drug Tominersen.   On April 27 Scott Schobel, Medical Director & Clinical Science Leader at Roche shared the interim analyses of the results from the Generation HD1 at the CHDI therapeutics conference.

During the Awareness month we are organizing several webinars, articles and multiple ways to include everyone into our activities. Try our Facebook Frame for the May month!