Category: News

Video interview: Living with HD

Alice Rivières is French. She is kind, well-spoken and optimistic. And she has a family history with Huntington’s disease (HD). Hear her strong testimony. Alices’ mother got sick 20 years ago. Ten years later she decided to get tested. It felt like a part of her just needed to know: needed to be certain to be…
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New drug for HD approved in USA

Exciting news for the Huntington’s disease (HD) community! The USA drug regulator, the FDA, has approved a new drug in the treatment of HD. Its commercial name is Austedo, but the drug was previously known as Deutetrabenazine. It originates from Tetrabenazine which is used to treat chorea – the jerky movements – often found in HD patients.  This is…
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You are invited to the Papal audience the 18th of May!

Dear friend, It is with great pleasure and excitement that we invite you to join us at the Vatican for the first ever papal audience with the Huntington’s disease (HD) community on May 18, 2017. Do you want to join us?   →REGISTER HERE← Note: The audience is free of charge.    On this day,…
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Want to learn more about HD?

The Scottish Huntington`s Association in Collaboration With Stirling University are offering a webbased course in HD:  Huntington`s Disease; an enabling approach to supporting families.  You find more information about the wonderful opportunity here.

The Constitution

Adopted at the business meeting of the European Huntington Association held at Boldern, Zurich, Switzerland on the 22nd of September 2002. Signed  by Asuncion Martinez, then president of EHA.

Reflecting on HD as a rare disease – and why Enroll-HD is so important

February 28 was the  Rare Disease Day – the day of international recognition for the myriad of little known but devastating diseases that can affect us as humans. The message is awareness. Awareness for the existence and struggles of those afflicted. Written by Chris De Sousa Rare diseases are rarer when less people know about…
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Launching of Our Voice

This autumn the EHA decided to create a new section at our website. It’s called Our Voice and it is dedicated to Huntington’s Disease stories that we carry with us. Our Voice contains video interviews with professionals and people directly affected by HD.

Collaboration between EHA and EHDN

The 1st of December a meeting took place between EHA and EHDN. The two organizations discussed how they could extend their collaboration and work coordinated with the project Stronger Together.

The World Orphan Drug Conference in Brussels

It was 300 attendees at the World Orphan Drug Conference in Brussels from the 16th to 17th of November. Among them was the European Huntington Association’s President Astri Arnesen, the Board Members Svein Olaf Olsen and Bea De Schepper.

The EHA Board Meeting in Sofia

The European Huntington Association (EHA) board meeting took place in Sofia, Bulgaria. Here the newly elected board discussed the future of EHA. The organization are focusing on especially two projects: Stronger Together and HD on the move. Both of them are initiated by EHA and are going to happen in close collaboration with the European Huntington’s Disease Network (EHDN) and sponsors.