Archives

Practicing Mindfulness with HD: Learning to Be Here Now

Living with Huntington’s Disease has taught me many things, but one of the most important lessons has been this: presence is a practice. Before my diagnosis, I didn’t give much […]

PTC518 PIVOT-HD Study Achieves Primary Endpoint

May 5, 2025 PDF Version – Study met primary endpoint with dose-dependent blood HTT protein lowering at Week 12 – – Favorable dose-dependent trends across clinical scales in Stage 2 […]

May Awareness Month 2025 – Shining a light on HD: One Action a Day

Every May, communities around the world come together to shine a light on Huntington’s Disease (HD). From families and caregivers to clinicians, researchers, and advocates, we are united by one […]

5 Self-Care Tips That Help Me Thrive with Huntington’s Disease

May is Huntington’s Disease Awareness Month a time to uplift the voices of those impacted, challenge stigma, and spotlight the strength that lives within our community. For me, this month […]

UniQure Announces FDA Breakthrough Therapy Designation Granted to AMT-130 for the Treatment of Huntington’s Disease

~ Breakthrough Therapy designation based on clinical evidence from Phase I/II trials showing meaningful slowing of disease progression ~ ~ Additional regulatory update and guidance on the Biologics License Application […]

Update on the Phase II GENERATION HD2 study

Roche has announced the continuation of the GENERATION HD2 Phase II clinical trial evaluating tominersen in individuals with early signs of Huntington’s disease. Following an interim analysis by an independent committee, no […]

EHA Conference 2025

We are excited to announce that the European Huntington Association will be organising its 5th Biannual Conference in Bucharest, Romania, from September 25th-28th, 2025. “Shaping our Future Together, We are the Change!” encapsulates the spirit […]

You Are Not Powerless: Reclaiming Control While Living with Huntington’s Disease

Living with Huntington’s Disease (HD) often feels like a series of quiet, and sometimes loud goodbyes. We say goodbye to the way our bodies used to move, to the stamina […]

A Look Back at the HDYO Congress 2025

The HDYO Congress 2025 brought together young people, families, researchers, and professionals from around the world for an unforgettable event dedicated to the Huntington’s Disease community. Over three inspiring days, […]

March 23: Celebrating Gratitude Day in the Huntington’s Disease Community

“Gratitude Day is a way to honor the collaboration of HD families with clinicians and scientists, which started with the efforts to identify the Huntington’s disease gene in the 1980s, […]