News

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!

Consortium meeting in Prague October 1st 2021

1st of October the Healthe-rnd consortium was finally able to meet again face-to-face in Prague.  Most of the partners were …
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EHDN Virtual Conference – September 2021

EHDN Online Plenary Meeting 2021 – Having listened to the presentations about ongoing and upcoming clinical trials during the EHDN …
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Important new findings about how the “emotional brain” is affected early in HD

An article by by Prof Åsa Petersèn and Sanaz GaberyThis article is modified and translated from Lund University homepage, Agata Garpenlind.Our …
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Presentation of the project Moving Forward in Tomsk, Russia

Tomsk, July 10, 2021 The European Huntington Association is happy to announce the launch of the international project «Moving Forward» …
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News about the results from Generation HD1

Results from Generation HD1As you all remember in March the independent Data Monitoring Committee advised Roche to halt dosing of …
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Wave Life Sciences: setback for Huntington’s disease trials

30. March 2021. Yesterday, Wave Life Sciences gave an update on PRECISION-HD1 and PRECISION-HD2. Due to disappointing results, the biotechnology …
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WEBINAR | Speak About It: How talking can be a way to cope

In this first webinar of Speak About It, Jeanne Gravfort will talk about her own method: Free Your Mind. Learn …
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WEBINAR | Improving Care for Rare Disease Patients in Europe

Rare Disease Day is taking place in February. The European Reference Network for Rare Neurological Diseases is therefore hosting a …
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DNA Repair: Hot Topic in Huntington’s Research

DNA damage repair has become a hot topic in Huntington’s research. By targeting proteins involved in the repair process we …
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