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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Recent News

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...

News

09 July 2024

uniQure Announces Positive Interim Data Update Demonstrating Slowing of Disease Progression in Phase I/II Trials of AMT-130 for HD

“We are very pleased with these new data demonstrating a statistically significant, dose-dependent slowing of the progression of Huntington’s disease and lowering...

News

25 June 2024

Wave Life Sciences Announces Positive Results from Phase 1b/2a SELECT-HD Trial with First Clinical Demonstration of Allele-Selective Mutant Huntingtin Lowering in Huntington’s Disease

Today, Wave Life Sciences announced positive results from SELECT-HD, our Phase 1b/2a placebo-controlled trial evaluating the investigational therapy WVE-003. These...

News

20 June 2024

PTC today announced promising 12 month results from their Phase 2 PIVOT-HD study of oral PTC518

At Month 12, mutant Huntingtin (mHTT) in the blood was lowered by 22% and 43% respectively for 5mg and 10mg doses. A similar result was seen in cerebrospinal fluid,...

News

14 June 2024

Sage Therapeutics Phase 2 Study Reinforces Cognitive Impact of Huntington’s Disease

Earlier this week Sage Therapeutics announced the results of their SURVEYOR study which quantified the cognitive impact of Huntington’s Disease. Using the...

News

03 June 2024

Update from the Middle East and North Africa

IHA President Svein Olaf Olsen was keynote speaker on Huntington’s Disease at the MENA Congress for Rare Diseases in Abu Dhabi last month. He spoke of the urgent...

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.