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!