The European Huntington Association is very happy to invite you to join the HD community at the upcoming conference in Blankenberge, Belgium. The conference is open to everyone who lives with HD in their family or has an interest in Huntington’s Disease as a healthcare professional, as a friend, relative or volunteer.
We will offer opportunities to learn about HD care and treatment and how to cope living with HD. The organiser will also offer a variety of social and physical activities. This will be the best place to get to know new people, learn and enjoy being part of a community. So many of us feel alone dealing with the disease.
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
📣 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 💜
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.
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.
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.
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 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.
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.
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
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.
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: 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.
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.
🙌 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
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.
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 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.
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.
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
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.
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.
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.
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.
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
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
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.
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
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
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.
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.
UniQure announce that they proceed recruitment in the high-dose group that was paused earlier this year.
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.
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.
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.
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.
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.
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.
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.
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.
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
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!
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.
, a young French adventurer who is cycling across Latin America to raise awareness about Huntington’s Disease.
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.
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.
Register for the Conference here
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.
To end Huntington’s Disease May Awareness Month 2022, we asked HD patients, family members and professionals some questions in order to raise awareness:
How did HD change your life?
What is most challenging?
What kind of support would help you?
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”.
Register for the Conference here
Your voice can make a difference in the HD community!
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.
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.
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
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.
to make it easier for you to navigate.
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.
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.
“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.
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.
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.
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 🌎
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:
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.
city where you took the picture.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
The Moving Forward Team: Filipa Júlio, Ruth Blanco and Zaynab Umakhanova, wants to wish you happy holidays and a joyful new year!
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.
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).
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.
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.
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 𝐎𝐧𝐞 𝐕𝐨𝐢𝐜𝐞 𝟒 𝐇𝐃
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
The EHA Board members met in Amsterdam on September 24th and 25th, 2021.
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
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!
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
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
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.
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.
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.
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”.
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.
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.
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.
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.
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.
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.
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.
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.
It’s time to make neurology a global public health priority
and the OneNeurology Initiative is aiming to do just that.
Meet Adriando and Dimitri, two HD family members who raised money for Huntington’s Disease while walking and biking through the world.
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.
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.
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.
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.
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.
How to take action:
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!
The EHA Conference 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 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.
