Moving Forward, a project made by the European Huntington Association

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What people say about us

"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!"
« Fabulous Project »
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« 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 »
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« 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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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.

Prilenia Phase 3 Trial with Pridopidine – Why is it Different?

– September 13th, 2022

For all those who have been following Huntington’s disease research for some time, Pridopidine is an “old acquaintance”.

To date, several studies have been conducted with this drug, looking closely to its effect on dopamine. Although they have helped us to confirm the safety and good tolerability of pridopidine, none of these trials has been completely successful.

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UniQure: the Highs and Lows of AMT-130

– September 9th, 2022

UniQure is a company with an expertise in gene therapy that has long been involved in the search for HD treatment options. Their preclinical studies in animal models showed that AMT-130, the gene therapy product candidate for HD, reduced the mutant huntingtin protein and was associated with a decrease in the progression of Huntington’s disease signs.

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PIVOT-HD, PTC Therapeutics Phase 2 Trial to Lower Huntingtin

– September 8th, 2022

PTC Therapeutics is a US biopharmaceutical company specialized in the development of  gene therapies for rare diseases. The team at PTC Therapeutics has screened more than 300,000 molecules in the search for an effective therapeutical approach to HD, one  that can lower huntingtin, can be administered orally and can have an impact inside and outside of the brain. 

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Online Conversation (in Spanish) with French Adventurer Dimitri Poffé

– August 18th, 2022

Last June, our Project Coordinator in Russia, Zaynab Umakhanova, had the opportunity to interview Dimitri Poffé and learn everything about his project “Explore for Huntington”.

Because of this project, which got him cycling all over Latin America for the last 6 months, Dimitri has also learned to speak Spanish.

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The Moving Forward “Let Us Talk” work was among the top scoring presentations at the European Conference on Rare Diseases & Orphan Products

– July 18th, 2022

In a busy month of work dissemination, Filipa Júlio, from the Moving Forward team, attended the 11th European Conference on Rare Diseases & Orphan Products at the end of June.

This online event was joined by over 800 people from the rare diseases’ community across Europe and it was thought to be the perfect platform to showcase the Moving Forward work about “Let Us Talk: A Communication Skills Training Course for Healthcare Professionals working with Huntington’s Disease”

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Participate in our Forum!

– May 6th, 2022

📣 Your voice can make a difference in the HD community!
The Moving Forward team has created a Forum, an online platform with several interesting topics about Huntington’s Disease.
 
Visitors will be able to ask questions, share experiences and connect with others:
  • This is your moment to speak and be heard.
  • This is your moment to learn from others and benefit from their experience.
  • This is the moment to use your voice!
 
Please share your thoughts, experiences & comments about this and other HD topics.