Category: News

HSG and HD-CAB Collaborate to Provide Global Patient Advisory Board

Rochester, NY — March 30, 2023 — The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., a world leader in conducting clinical trials for Huntington’s […]

Prilenia Achieves Last Patient Last Visit in Phase 3 PROOF-HD Clinical Study for Huntington’s Disease

PROOF-HD is the only late-stage study in Huntington’s disease targeting clinical progression; topline results expected in early Q2 2023 NAARDEN, Netherlands and WALTHAM, Mass., 28 March 2023 – Prilenia Therapeutics B.V., a […]

Huntington’s Gratitude Day 2023

Dear friend,On March 23rd, 1993, scientists announced the discovery of the gene that causes Huntington’s Disease (HD). The announcement, after decades of research, made evident the partnership of ‘families living […]

MENA Organization for Rare Diseases and the International Huntington Association join forces in a unique collaboration!

In a key breakthrough, the MENA Organization for Rare Diseases and the International Huntington Association signed a memorandum of understanding during the MENA Organization for Rare Diseases annual meeting 2023, […]

Rare Disease Community Comes Together to Release Book for Rare Disease Day, February 28

Huntington’s Disease has been steeped in secrecy and fear for generations, leaving people in the community without a voice. This book changes that. Huntington’s Disease Heroes features twenty-six people from […]

Rare Disease Day 2023 Campaign

Join our campaign for Rare Disease Day! February 28th is Rare Disease Day, where the rare community comes together, finds support and raises awareness for rare diseases across the globe […]

Roche/ Genentech update about GENERATION HD2 study

Roche/ Genentech announce that Phase II GENERATION HD2 study is now open. This is great news for the international community since it is planned to run in 15 countries (Argentina, […]

Novartis ends the VIBRANT-HD study

Novartis shared today the difficult news that they are stopping the VIBRANT-HD study of Branaplam, after some participants devoloping side effects. Read the full Novartis letter Even if this news […]

International Huntington Association receives a very generous donation

International Huntington Association has received a very generous donation. A Norwegian donor is behind the donation. He wishes to remain anonymous. The money is earmarked for a new position at […]

uniQure announced they are resuming the patient enrollment at the higher-dose level in AMT-130 trial

A Message to the Huntington’s Disease Community from uniQure Dear Huntington’s Disease Community Members, This morning, uniQure issued a press release which included an update on our clinical trial ofAMT-130 […]