News portal

Find information about the latest news and updated events in the HD community, medical research and multimedia.

This video will help you discover all the site features and resources.

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Moving Forward, a project made by the European Huntington Association

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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"Young people who are pre-symptomatic or possible carriers of Huntington's disease are a group with great potential but often invisible. We need to pay more attention and increase the participation of this group in the global health and social movement of the wider Huntington family, as they are the ones who must lead the change. Moving Forward is an ideal project to promote unity, strength and coordination among those who share the same situation. It is about pursuing common goals and building a path towards a future in which the prevention of the onset of the disease is one of the research priorities."

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“Knowledge is Key - that is why the Moving Forward project is so important. It helps to inform the Huntington’s community about upcoming trials, supports people by providing information about the disease and empowers people by helping them raise their voices. I especially love the list of books related to HD in the bookshelf section. The Moving Forward project is an important resource for the HD community.”

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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.

The European Huntington Association met the Icelandic HD Community – and was really impressed

– May 22^nd 2023

The European Huntington Association was very happy to attend the Conference of the newly established HD Association of Iceland.The meeting was held at the modern campus of the Reykjavík University on May 15^th, the International Huntington’s Disease Awareness Day.

About 50 family members, healthcare professionals and researchers attended this Conference with the topic “Developments in Huntington’s Disease: From Genetics to Therapy”, which was also live streamed.

Read the full article here

30th Anniversary of the HD Gene Discovery

– May 10th, 2023

30 years have passed since the HD gene discovery in March 1993. The EHA acknowledges every single day the impact that the discovery of the mutated gene that causes Huntington’s Disease (HD) has had on the global HD community.

At the same time, the EHA realizes that the younger generations from HD families are often unaware of the importance of this scientific breakthrough to so many aspects of their lives.

Therefore, the EHA/Moving Forward team is launching an online campaign with interviews to key HD family members and professionals who will share all the stories and details about this discovery.

This first video explains what happened in Venezuela 30 years ago and how this still impacts us today. The video is in Spanish, with English subtitles.

Watch the videos here

“What Can I Do?” – The second informal meeting for people at-risk for HD and people with premanifest HD in Spain

– May 5th, 2023

The Moving Forward team is organizing the second informal meeting for people at-risk for HD and people with premanifest HD in Spain. The meeting will take place at the Centro Social Playa Gata, headquarters of ACHE – Asociación Corea de Huntington Española in Madrid, from 16:00 to 18:00 on the 1st of July (Saturday).

Read the full article here

Enroll-HD: 10 Years Observing HD

– March 15, 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.

Read the full article here

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.

Read the full article here

Roche GENERATION HD2: giving Tominersen a second chance

– February 14th, 2023

After a hard setback in March 2021, when Roche stopped the GENERATION HD1 trial because of potential safety issues, the company is now fully prepared to give its huntingtin-lowering drug, Tominersen, a second chance.In fact, at the end of 2021, a comprehensive data analysis led Roche to conclude that the drug seemed to have benefited younger people who began the trial in earlier stages of HD.

Read the full article here