Articles with the topic: community

This Gratitude Day, HDBuzz Is Grateful For The Partnership Between HD Families And Scientists

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.

Dr Sarah HernandezMarch 23, 2025

Huntington’s Disease Heroes: A Gratitude Day Feature on Factor-H

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.

Dr Rachel Harding and Dr Sarah HernandezMarch 23, 2025

Community voices power change through research surveys

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.

Dr Leora FoxFebruary 03, 2025

2024: Year in Review

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.

Dr Rachel HardingJanuary 02, 2025

Self-determination on the HD journey: the role of Advanced Care Planning

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.

Dr Tamara MaiuriDecember 02, 2024

Face-to-face: Huntington’s disease families are heard by the FDA

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.

Dr Sarah HernandezNovember 22, 2024

Highlighting a link between brain disorders on Ataxia Awareness Day

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.

Dr Leora FoxSeptember 25, 2024

Hats off to brain donors on Brain Donation Awareness Day

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.

Dr Sarah HernandezMay 07, 2024

Real talk: Q&A with Roche about GENERATION-HD1

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

Dr Sarah Hernandez and Dr Leora FoxSeptember 28, 2021

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