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1st International UAE Rare Disease Society Congress

IHA interviews Maaike – an emotional story

https://www.youtube.com/watch?v=7pA54ImDLAk&t=12s&ab_channel=InternationalHuntingtonAssociation Svein Olaf Olsen, President of the International Huntington Association, interviews Maaike, an example of strength and hope, with a moving story.

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 […]

IHA interviews Robert Pacifici from CHDI

IHA interviews Robert Pacifici from CHDI IHA interviews Robert Pacifici from CHDI IHA interviews Robert Pacifici from CHDI IHA interviews Robert Pacifici from CHDI Svein Olaf Olsen, President of the […]

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 […]

Joyvest demonstration

Have you heard of the Joyvest by Lyckna? It’s an activity vest that plays music when you move! Carina, from the Huntington’s Disease Association (RHS) in Sweden makes a demonstration. […]

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 […]

Wave Life Sciences Announces Positive Update from Phase 1b/2a SELECT-HD Trial with Initial Results Indicating Allele-Selective Target Engagement with WVE-003 in Huntington’s Disease

September 20, 2022 at 7:30 AM EDT PDF Version Single doses of WVE-003 appear generally safe and well-tolerated CSF mutant huntingtin (mHTT) protein was reduced following single doses of 30 […]

2022 Latin American Huntington’s Disease Conference

The 2022 Huntington’s Disease (HD) Latin American Conference brings together leading international representatives of the HD community – clinicians, scientists, social workers, students, family associations, affected individuals, and at-risk youth. […]