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Reposted by Huntington's Disease Association of Ireland

HDBuzz @hdbuzzfeed.bsky.social · 15/05/2025

Red Light, Green Light: How Huntington’s Disease Influences Genetic Traffic Lights en.hdbuzz.net/435

Reposted by Huntington's Disease Association of Ireland

Irish Hospice Foundation @irishhospice.bsky.social · 15/05/2025

This #HelloHowAreYou Day, we encourage you to reach out to a friend or family member who may be #grieving. Whether it's a recent or old loss, sending a simple message like this one can mean a lot. 💛 @mentalhealthirl.bsky.social

An image of a What's App message. The message is written from the perspective of someone checking in on their grieving friend.

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Huntington's Disease Association of Ireland @hdai-ie.bsky.social · 08/05/2025

Deputy Marie Sherlock @labourpartyireland.bsky.social called for a review of the Assisted Decision Making Act in the Oireachtas today. She spoke of Huntington’s disease when raising concerns for people who may be unintentionally excluded from services if they are unable to give informed consent.

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Reposted by Huntington's Disease Association of Ireland

HDBuzz @hdbuzzfeed.bsky.social · 17/04/2025

It's Good News Thursday! UniQure has been granted Breakthrough Therapy designation for AMT-130. Development and review will be expedited. Woohoo! It's given to drugs that could treat a serious condition and have prelim clinical support for solid improvement on clinically significant endpoints.

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Huntington's Disease Association of Ireland @hdai-ie.bsky.social · 08/04/2025

Looking forward to the @tcddublin.bsky.social Huntington's Disease Research Day on May 9th. #HuntingtonsDisease @evawoods.bsky.social @cpeelo.bsky.social Registration Link forms.gle/hAjaRjo1Npmj...

Huntington's Disease Research Day May 9 TCD

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Reposted by Huntington's Disease Association of Ireland

Disability Federation of Ireland @disabilityfed.bsky.social · 26/03/2025

🗞️ In the Irish Times this morning... Our Policy Advocacy Manager Fleachta Phelan is calling for urgent action on the Cost of Disability and disability poverty. IT letter: bit.ly/3R9xlZz Article: bit.ly/4j16AlF Deep dive: bit.ly/4bLmkaa

bit.ly

Letters to the Editor, March 26th: On the extra costs of living with a disability, and Ireland and a changing world

Disability social protection payments remain woefully inadequate, leaving many people struggling to afford basic necessities

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Reposted by Huntington's Disease Association of Ireland

jimmyplowell.bsky.social @jimmyplowell.bsky.social · 20/03/2025

Barranquitas, Venezuela has the world’s highest prevalence of HD. Tonight they had a candlelight vigil honoring family lost to HD, leading to HD Gratitude Day this Sunday recognizing the partnership of families and scientists in the quest for a cure. Join us! #HDGratitudeDay

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Huntington's Disease Association of Ireland @hdai-ie.bsky.social · 10/03/2025

Listen in to this #HuntingtonsDisease feature with Ivan Yates on Pat Kenny Show @newstalkfm.bsky.social today for #BrainAwarenessWeek open.spotify.com/episode/52V7...

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Huntington's Disease Association of Ireland @hdai-ie.bsky.social · 10/03/2025

Prof. Orla Hardiman reflects on 20 years of Brain Awareness and her work with the #NeurologicalAllianceofIreland to advocate for the 860,000 people in Ireland living with Brain Conditions #brainawarenessweek2025

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Reposted by Huntington's Disease Association of Ireland

HDBuzz @hdbuzzfeed.bsky.social · 05/03/2025

Researchers used CRISPR to turn off more than 50 genes involved in DNA repair. This helped them work out which genes influence how the genetic C-A-G repeat that causes Huntington’s disease (HD) changes over time, helping to uncover potential targets that could halt the disease. en.hdbuzz.net/409

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Huntington's Disease Association of Ireland @hdai-ie.bsky.social · 05/03/2025

Deputy Erin McGreehan hosts the Neurological Alliance of Ireland Oireachtas members briefing to call for action on neurorehabilitation @oireachtasnews.bsky.social #MyNeuroRehabTeam #BrainAwarenessWeek2025

Neurological Alliance of Ireland address Oireachtas members

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Huntington's Disease Association of Ireland @hdai-ie.bsky.social · 26/02/2025

HDAI attended the Oireachtas All Party Group for Rare Diseases today hosted by Deputy Padraig O'Sullivan and attended by Minster for Health Jennifer Carroll MacNeill and many TDs and Senators interested in #RareDiseases #RareDiseaseDay2025

Minister for Health Jennifer Carroll MacNeill and Vicky McGrath RDI CEO

Deputy Padraig O'Sullivan welcomes attendees

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Reposted by Huntington's Disease Association of Ireland

Avril Kennan @avrilkennan.bsky.social · 26/02/2025

Good to see a strong focus both on patients and clinical trials at the #IPHAconference2025. #HealthResearchMatters

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Reposted by Huntington's Disease Association of Ireland

jimmyplowell.bsky.social @jimmyplowell.bsky.social · 15/02/2025

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Reposted by Huntington's Disease Association of Ireland

HDBuzz @hdbuzzfeed.bsky.social · 25/02/2025

Good morning! Day 1 of #CHDI2025 is kicking of NOW! Get ready to follow along for some exciting Huntington’s disease research over the next 3 days.

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Reposted by Huntington's Disease Association of Ireland

HDBuzz @hdbuzzfeed.bsky.social · 14/02/2025

HDBuzz will be at CHDI's Huntington's Disease Therapeutics Conference from Feb 24-27. We'll be covering the research updates on Bluesky *live*, as they happen! Follow us on Bluesky so you don't miss out!

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Reposted by Huntington's Disease Association of Ireland

EHDN News @ehdn-news.bsky.social · 26/11/2024

The November issue of EHDN News is online! Highlights include coverage of EHDN & Enroll-HD 2024 and an interview with the amazing Anne Rosser. #HuntingtonsDisease #HDCommunity #RareDisease #ClinicalResearch PM or email newsletter@euro-hd.net with your comments and views!

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