community
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Huntington’s Disease Heroes: A Gratitude Day Feature on Factor-H
In honor of #HDGratitudeDay, happening today, March 23, 2025, HDBuzz interviewed Dr. Ignacio Muñoz-Sanjuán, President and Founder of Factor-H—a nonprofit dedicated to supporting Huntington’s disease families in Latin America.
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This Gratitude Day, HDBuzz Is Grateful For The Partnership Between HD Families And Scientists
This #HDGratitudeDay, we’re going beyond science & getting to the heart of what drives this community—the people. Learn how Factor-H is bringing hope & humanity to the most vulnerable within the HD community, and join us in amplifying their message.
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Community voices power change through research surveys
HDYO released data from recent surveys of the global HD community. Learn more about the findings and how surveys can help shape the future of HD care and support.
By Dr Leora Fox -
2024: Year in Review
As we begin 2025, we look back on all of the Huntington’s disease research news and progress the field has made in the last 12 months.
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Self-determination on the HD journey: the role of Advanced Care Planning
Advanced Care Planning is a tool that can allow people living with Huntington’s disease to compassionately engage with loved ones about their future care, taking thoughtful steps at their own pace while they’re able, to ensure their wishes are met.
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Face-to-face: Huntington’s disease families are heard by the FDA
The HDSA recently coordinated a meeting between Huntington’s disease families and the US regulatory agency that approves medicines, to amplify the community’s voice and help move us toward treatments.
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Highlighting a link between brain disorders on Ataxia Awareness Day
September 25th is Ataxia Awareness Day, so HDBuzz is highlighting the connections between HD and Ataxia research. Learn about how these fields have historically grown in parallel and informed one another.
By Dr Leora Fox -
Hats off to brain donors on Brain Donation Awareness Day
May 7 is Brain Donation Awareness Day. Today we highlight the selfless donation that many HD families have made, sending our gratitude, sharing research updates made with those precious brains, and detailing resources for brain donation.
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Real talk: Q&A with Roche about GENERATION-HD1
The HDBuzz team sat down (virtually) for an in depth Q&A session with the team at Roche to answer questions about tominersen and the recent halting of the GENERATION-HD1 trial
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Updates from the EHDN Plenary Meeting 2020
Read our summary of the latest updates from the EHDN Plenary Meeting 2020