Moving Forward, a project made by the European Huntington Association

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What people say about us

« Fabulous Project » « Very important project. You are doing your job very professionally, supporting and connecting people with HD in Europe, working together with researchers, neurologists, geneticists and other healthcare professionals, sharing information with HD families. »
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« Excellent initiative from the European Huntington Association, with all kinds of information and contents » « I had the pleasure of participating in one of the most spectacular HD events of my life thanks to the European Huntington Association »
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"Moving Forward is a fantastic project by the EHA that provides educational and emotional support to HD families! I am glad that I had the opportunity to be a part of its activities. It is an important step in connecting people affected by HD worldwide, in improving care, and in strengthening the HD community!"
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"I believe this is a unique project that moves science and society forward - towards awareness and a better quality of life for families, towards an understanding of the disease and, therefore, knowledge about the behaviour of people who suffer from HD, towards a better research process. I would like to say a special word about the website of the project - this is a unique place where you can find everything - books related to Huntington's disease, various resources on nutrition and care, clinical guidelines from different countries, video interviews with families. There is no other resource like it in the world."
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"The Moving Forward meeting has been a very positive experience for all of us, which has allowed us not only to strengthen the bond between clinicians, researchers, biobank and the patients and families affected by this disease, but also to share hopes and realities. Thank you very much for your effort and participation".
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"Moving Forward brings us all together, researchers, professionals, family members and patients. It gives us a face and enables us to speak without barriers, without fear, with confidence. The essential ingredient of meetings such as the Moving Forward meeting in Valencia are emotions, and these are undoubtedly provided by the testimonies of patients and their families. It is a privilege to be part of the unconditional HD community".
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All these initiatives are a relief, they are comforting. They help on a daily basis, both the professionals who are dedicated to care, as well as the patients and their families. Therefore, thank you to the Moving Forward project!
"First of all, I would like to thank you for your work and that of the whole team, not only for this project, but also for facilitating the dissemination of all the information available in Spanish, so that it can be accessible to everyone, it is invaluable, and the genetic services, when diagnosing the disease, should inform of your existence and the resources you offer. And for the psychological support project, not only for this disease, but to face any difficulty in life, it has been a gift."
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What people say about us

Everything about HD

We have compiled reliable information to give you an overview of Huntington’s disease. You will find interesting, clear, and didactic links to articles, FAQ sheets, videos and audio files about the history, basics, and symptoms of HD. We believe that the better you understand HD, the better prepared you will be to deal with this diagnosis.

Research

We have compiled information about past, ongoing and future HD clinical trials and studies. You will also find didactic contents about the basics of clinical trials and drug discovery pipeline. We believe that the more knowledgeable you are about the research process, the more proactive you will be in the collective effort to find effective disease-modifying treatments for HD.

Support

We have compiled different sorts of information (articles, videos, podcast, online forum) to help HD families adjust to this diagnosis and get to know the HD global community. You will find valuable resources that provide psychological support, as well as practical tips to better cope with HD challenges. We believe that the more tools you have to help you face HD, the better quality of life and well-being you will achieve.

An inspiring online session for the Norwegian HD Community

– February 15th 2024

At the end of January, the Moving Forward team organized an online session for the Norwegian HD community with the topic “Genetic Testing for HD: There are no Right or Wrong Choices”.

We invited three people to tell their stories about their connection to Huntington’s disease and their experiences with HD genetic testing. Some months ago, when we conducted a survey to understand the needs of the Norwegian HD community, people told us they would like to learn more about genetic testing.

Inspiring videos in Spanish about Huntington's Disease research

– 9th February 2024

In November 2023, we held the 4th Moving Forward Meeting in Spain. We met in Malaga, at the Centro de Innovación Social La Noria, and enjoyed an unforgettable day, full of valuable learnings on many aspects of Huntington’s disease.

We are very happy to share with you the recordings of some of the interesting presentations of the meeting. You will find the links to the several contents discussed in Malaga.

Welcome on board, Sweden!

 – 9th February 2024

The Moving Forward project has recently welcomed Sweden in the team.

This close collaboration between the European Huntington Association and the Swedish HD Association is starting with a survey dedicated to the experiences and needs of the Swedish HD community.

So, if you are from an HD family and you live in Sweden, this is just the right opportunity for you to get your voice heard!

Take this short, simple and anonymous survey before March 15th and help us to understand what your real needs are.

PROOF-HD: understanding the preliminary results and balancing our expectations

– June 12th, 2023

Prilenia presented the preliminary topline results of the PROOF-HD clinical trial (PRidopidine Outcome On Function in Huntington Disease) at the end of April. Last year, the Moving Forward team wrote a news piece about this trial.

Now, we look at the first findings of PROOF-HD and share our expectations for the near future. PROOF-HD enrolled 499 participants with early manifest Huntington’s disease (HD) in the U.S., Canada, Austria, Czech Republic, France, Germany, Italy, the Netherlands, Poland, Spain and the United Kingdom.

Enroll-HD: 10 Years Observing HD

– March 15th, 2023

Enroll-HD is the world’s largest observational study being conducted in HD. This study is promoted by the CHDI Foundation, Inc. to speed up the development of effective treatments for Huntington’s Disease. Enroll-HD aims to observe and monitor how HD affects people and how it changes over time. It is focused on collecting a huge amount of demographic, clinical and biological information from the worldwide HD community with three specific goals: enhance the understanding of HD, support clinical trials and improve clinical care.

JOIN-HD: A platform for Juvenile HD

– March 9th, 2023

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.