@hdai-ie.bsky.social
HDAI RCN 20025656. Sharing news on Huntingtons Disease /connecting to the international HD community. http://huntingtons.ie
Have you read the @hdbuzzfeed.bsky.social June 2025 update? HDBuzz share.google/zKHcUhxdYg35...
10.07.2025 08:54 — 👍 0 🔁 0 💬 0 📌 0
Appreciate the anti war theme this eve @johncreedon.bsky.social
If anti-fascism appeals please share this webinar, a tribute to #WoodyGuthrie
www.eventbrite.co.uk/e/when-bob-d...
Red Light, Green Light: How Huntington’s Disease Influences Genetic Traffic Lights
https://en.hdbuzz.net/435
An image of a What's App message. The message is written from the perspective of someone checking in on their grieving friend.
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
15.05.2025 08:25 — 👍 5 🔁 2 💬 1 📌 0
@independent.ie supporting Huntingtons Disease Awareness month.
‘There’s been so much progress in terms of scientific research – we’ve been bringing it out of the shadows’ Charles Sabine OBE
shorturl.at/HAsFa
Deputy Marie Sherlock, Labour Party
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.
08.05.2025 18:57 — 👍 1 🔁 0 💬 0 📌 0
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.
Huntington's Disease Research Day May 9 TCD
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...
🗞️ 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
#HuntingtonsDisease #ClinicalTrials are something to cheer about!
26.03.2025 18:44 — 👍 0 🔁 0 💬 0 📌 0
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
20.03.2025 03:33 — 👍 3 🔁 1 💬 0 📌 0Jimmy demonstrates the #HDGratitudeDay sign so you can practice for March 23rd! @jimmyplowell.bsky.social
21.03.2025 07:51 — 👍 0 🔁 0 💬 0 📌 0
Listen in to this #HuntingtonsDisease feature with Ivan Yates on Pat Kenny Show @newstalkfm.bsky.social today for #BrainAwarenessWeek
open.spotify.com/episode/52V7...
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
10.03.2025 12:56 — 👍 0 🔁 0 💬 0 📌 0
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
Neurological Alliance of Ireland address Oireachtas members
Deputy Erin McGreehan
hosts the Neurological Alliance of Ireland
Oireachtas members briefing to call for action on neurorehabilitation @oireachtasnews.bsky.social #MyNeuroRehabTeam
#BrainAwarenessWeek2025
Minister for Health Jennifer Carroll MacNeill and Vicky McGrath RDI CEO
Deputy Padraig O'Sullivan welcomes attendees
Rare Disease Day
Rare Reality Survey Facts
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
26.02.2025 20:09 — 👍 1 🔁 0 💬 0 📌 0
Good to see a strong focus both on patients and clinical trials at the #IPHAconference2025.
#HealthResearchMatters
15.02.2025 22:34 — 👍 4 🔁 2 💬 0 📌 1
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.
25.02.2025 16:36 — 👍 11 🔁 6 💬 1 📌 3HDBuzz 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!
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!
Excited to share my joint first-author paper (with @rachiscahill.bsky.social) published today in Nature Medicine (@natmedicine.bsky.social, @nature.com). Our findings are timely as the #HD therapeutic landscape expands toward preventive clinical trials. 🔓 Open access: www.nature.com/articles/s41...
17.01.2025 11:00 — 👍 33 🔁 16 💬 2 📌 0
