Articles with the topic: community

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

Updates from the EHDN Plenary Meeting 2020

Updates from the EHDN Plenary Meeting 2020

Read our summary of the latest updates from the EHDN Plenary Meeting 2020

Dr Rachel HardingJanuary 08, 2021

What does COVID-19 mean for Huntington’s disease families and HD research?

What does COVID-19 mean for Huntington’s disease families and HD research?

COVID-19 update: what does it mean for HD families, how does it impact HD research, and how has it changed the way science works?

Dr Sarah Hernandez and Professor Ed WildApril 06, 2020

HDBuzz Enrolls in Enroll-HD

HDBuzz Enrolls in Enroll-HD

As promised, HDBuzz's Jeff Carroll finally signed up for the Enroll-HD study. Learn more about this important global HD "observational study" here.

Dr Jeff CarrollJuly 31, 2018

Exciting Experiments in "Open Science" by Huntington's Researchers

Exciting Experiments in "Open Science" by Huntington's Researchers

Brave scientists open their notebooks to help drive HD research at the risk of getting "scooped".

Anna Marie YannyApril 20, 2018

Donate

Please consider making a donation if you value the services that HDBuzz provides. We want HDBuzz to be sustainable so that we can continue to report unbiased science to the HD community.

With your support, we can ensure the continuity of our services. Nothing is expected, but everything is appreciated and sustains what we do at HDBuzz. Please consider giving what you're able. More information...