💻 WEBINAR: “All you need to know about PROOF-HD” hosted by Prilenia
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.
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
HD Trial Finder - Watch the new video presentation of the new Webpage updates
EHA Board meeting in Bolognia, April 3rd 2022
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.
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.
UniQure announced the completion of patient enrollment in the first two cohorts of its Clinical trial AMT-130 for HD
HD-CAB Training session 💻 in European Medicines Agency Processes for Marketing Authorisation and Patient Involvement
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.
Huntington's disease is everywhere, in every country and region worldwide 🌍
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! 🙌
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.
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.
JOIN-HD - Juvenile onset HD Global Registry
Online Education for professional care givers
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.
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.
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.
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.
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.
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.
Happy New Year 2022
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).
The 3rd ERN-RND Winter School in collaboration with EPNS is dedicated to rehabilitation issues in patients with symptoms of a rare neurological disease
The first Moving Forward face-to-face meeting after Covid!
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.
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.
HD-CAB meeting with PTC
Moving Forward in Russia and Spain
HD-CAB new video
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
EHA Board Meeting and General Assembly
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
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!
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.
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.
EHA has written an article for the Journal of Personalized Medicine
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.
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.
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”.
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.
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.
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.
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.
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.
Improving access to care and treatment for Huntington’s Disease patients and families
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
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.
Join our Light
it up 4 HD!
How to take action:
- Light your house with purple or blue
- Take a picture
- Upload it on social media and add #LIGHTITUP4HD
- 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!