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 with HD’ and the ‘scientists working on their behalf’. This milestone and partnership were celebrated at homes, laboratories, and clinics.Around
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, March 3-5, Dubai. “The International Huntington Association looks forward to the partnership with MENA Organization for Rare Diseases that will
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 nine countries who bravely share their personal stories about living in the shadows of this disease. By doing so they
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 This year we want you to join the #LightUpForRare campaign. To participate you just need to send us a photo
Svein Olaf Olsen, President of the International Huntington Association, interviews Maaike, an example of strength and hope, with a moving story.
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, Austria, Australia, Canada, Denmark, France, Germany, Italy, New Zealand, Poland, Portugal, Spain, Switzerland, UK and USA). It is starting on
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 can be disappointing, the HD Community will keep positive and hope the remaining trials and tests can bring some good
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, interviews Robert Pacifici, the Chief Scientific Officer in CHDI, at the EHDN Plenary Meeting 2022. They had
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 IHA’s office in Lisbon and is given under this condition. The newly created position will strengthen IHA’s work in relation
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. This is a physical therapy, highly recomended for working and training your muscles, while also having fun, just like Dina
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 with HD’ and the ‘scientists working on their behalf’. This milestone and partnership were celebrated at homes, laboratories, and clinics.Around
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, March 3-5, Dubai. “The International Huntington Association looks forward to the partnership with MENA Organization for Rare Diseases that will
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 nine countries who bravely share their personal stories about living in the shadows of this disease. By doing so they
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 This year we want you to join the #LightUpForRare campaign. To participate you just need to send us a photo
Svein Olaf Olsen, President of the International Huntington Association, interviews Maaike, an example of strength and hope, with a moving story.
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, Austria, Australia, Canada, Denmark, France, Germany, Italy, New Zealand, Poland, Portugal, Spain, Switzerland, UK and USA). It is starting on
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 can be disappointing, the HD Community will keep positive and hope the remaining trials and tests can bring some good
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, interviews Robert Pacifici, the Chief Scientific Officer in CHDI, at the EHDN Plenary Meeting 2022. They had
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 IHA’s office in Lisbon and is given under this condition. The newly created position will strengthen IHA’s work in relation
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. This is a physical therapy, highly recomended for working and training your muscles, while also having fun, just like Dina
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