International Huntington Association

INTERNATIONAL
HUNTINGTON
ASSOCIATION

For five decades, the International Huntington Association has been supporting the global HD community. We have been raising awareness, promoting drug trials, lobbying for services and connecting people and organisations all around the world. As we celebrate this significant milestone, we stand determined in our commitment to make a difference. Our 50th-anniversary celebration marks not only a milestone in our history but also the beginning of important new initiatives, projects aimed at furthering our impact, reaching ever more people and bringing hope and comfort to all.

A Global Effort to Help People With Huntington's Disease

A non-profit umbrella organization established in 1974 by Marjorie Guthrie. It now represents more than 250 000 individuals and member associations all over the world

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Volunteer in IHA

If you want to help the Huntington's Disease community, we are looking for people willing to join forces and create something together

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Want to set up your local association?

If you want to start your own association to support HD, we can help you understand how

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You can help us make a difference

Your donation will help us supporting individuals and families that are affected by HD

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HD Focus: News Across the Globe

A dedicated news platform that gathers the latest updates from local Huntington’s disease associations and key global resources. Our goal is to provide the HD community with timely, relevant, and insightful news from across the world, helping families, caregivers, and advocates stay informed and connected. Stay up to date with the latest advancements in research, support initiatives, and community stories.

Recent News

News

11 December 2024

UniQure announces alignment with FDA on key elements of accelerated approval pathway for AMT-130

Yesterday, uniQure issued a press release announcing alignment with the US Food and Drug Administration (FDA) on key elements of an accelerated approval pathway...

News

09 December 2024

"The Present", documentary featuring Dimitri Poffé, is now available on Youtube

Dimitri Poffé is an already known member of the HD Community. After testing positive for Huntington’s Disease, Dimitri embraced a bicycle journey through South...

News

09 December 2024

PTC Therapeutics Enters into a Global License and Collaboration Agreement with Novartis for PTC518 Huntington's Disease Program

December 2, 2024 – PTC to receive $1.0B in cash at closing –– PTC is eligible to receive up to $1.9B in development, regulatory...

News

09 December 2024

Sage Therapeutics ceases development of dalzanemdor in HD

The Phase 2 DIMENSION Study did not meet its primary endpoint Dalzanemdor was generally well-tolerated; no new safety signals were observed Based on these data,...

News

05 November 2024

Livable Lives - a new book that highlights stories from people impacted by HD around the world

PRESS RELEASE – October 25, 2024, Moscow, Idaho, USAWe are pleased to announce the launch of a new book about Huntington’s disease (HD) called, Livable Lives: Conversations...

News

02 October 2024

LoQus23 Therapeutics announces £35 million financing to advance a new drug aimed at inhibiting somatic expansion in Huntington's Disease

Financing led by leading life sciences venture capital firm Forbion, with participation from existing investors SV Health Investors’ Dementia Discovery Fund (DDF)...

News

26 September 2024

FDA Grants Fast Track Designation to PTC518 Huntington's Disease Program

PTC518 is an oral medication that reduces the production of the mutated Huntingtin protein that causes disease progression. Programs...

News

03 September 2024

Prilenia’s Pridopidine for Huntington’s Disease Accepted for European Marketing Authorisation Review

Prilenia, a clinical stage biotechnology company focused on the urgent mission to develop novel therapeutics to slow the progression of neurodegenerative diseases...

Stories

01 August 2024

Chronicle of a Relentless Quest: The Making of a Foundation

I belong to the third generation of a family affected by Huntington’s Disease, but it wasn’t until 2024, thanks to the tireless efforts of my second father,...

News

11 July 2024

IROS, Prilenia and International Huntington’s Disease Association collaborate on first-ever Huntington’s disease (HD) trial in the MENA region

A landmark trial aims to bring pridopidine, an innovative new treatment for Huntington’s disease (HD), to patients in the region. This will help raise awareness...

HD Blog

HD is a complex disease, and even with a lot of information available today, we believe that something is missing: personal stories. Feelings, advice, choices, ideas, indecision, mechanisms, and thoughts all need a space to be shared. Therefore, HD Blog was created to provide such a place.

The community is essential because it helps us understand that we are not alone in our struggles as others feel the same way we do.