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

Abu Dhabi, UAE; June 19, 2024: IROS, an Abu Dhabi-based contract research organization (part of the M42 group), has partnered with Prilenia Therapeutics, a clinical-stage biotech company, and the International […]

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 of NfL in the CSF at 24 months,” […]

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 results demonstrate that WVE-003 selectively lowers toxic, mutant huntingtin (mHTT) […]

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, where […]

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 HD-Cognitive Assessment Battery (HD-CAB) they measured the difference […]

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 need to […]

FDA grants uniQure Regenerative Medicine Advance Therapy (RMAT) Designation

Today we are very happy in the Huntington community.  The announcement from Uniqure that the company has received the Regenerative Medicine Advanced Therapy (RMAT) “Designation for Investigational Gene Therapy AMT-130 […]

We Exist: Tanita Allen recounts her struggle to get access to genetic testing in the United States

In her memoir “We Exist”, Tanita Allen tells of the difficulty she had in having her symptoms correctly diagnosed as Huntington’s Disease. Time and again, she was misdiagnosed because doctors refused […]

Free Online Psychotherapy Programme for People with HD

Doctors at the University of Reading (UK) have developed a free online psychotherapy programme for people with Huntington’s Disease.  It’s part of a research project that looks at how people […]

A new association for Huntington’s Disease is funded in Pakistan – HDSOP

Founding of the Huntington’s Disease Society of Pakistan April 24th 2024 Last week another national association was created.  The Huntington’s Disease Society of Pakistan (HDSOP) joined the growing  list of […]