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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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.

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.

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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.

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"Huntington's Disease Heroes" the newest book added to our Bookshelf section

– February 28th, 2023

The goal of this book is to share inspiring stories from the underrepresented HD community. We will meet true heroes who fight every day the fear and stigma surrounding Huntington’s disease. By sharing how their lives were shaped by the challenges they have faced, the authors want to empower the rare disease community and encourage others to speak up.

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"Uncomplicating HD Research": Videos of the 2nd Moving Forward Meeting in Valencia

– January 17th, 2023

In November 2022, we have organized the 2nd Moving Forward meeting in Spain. We were lucky to have with us several clinicians and researchers strongly committed to Huntington’s Disease, who work round the clock to find the best therapies to improve the quality of life of all those impacted by this disease. 

Watch the videos here

New Online Psychological Support Service in Spain

– January 10th, 2023

The second Moving Forward meeting in Spain that happened earlier this month in Valencia was the stage to announce the launching of a new Moving Forward service for the Spanish HD community – an online psychological support service exclusively dedicated to people at risk for HD and people with premanifest HD 

Read the full article here