Huntington's Disease Association of Ireland
@hdai-ie.bsky.social
HDAI RCN 20025656. Sharing news on Huntingtons Disease /connecting to the international HD community. http://huntingtons.ie
Reposted by Huntington's Disease Association of Ireland
Have you read the @hdbuzzfeed.bsky.social June 2025 update? HDBuzz share.google/zKHcUhxdYg35...
June 2025: This Month in Huntington’s Disease Research – HDBuzz
share.google
July 10, 2025 at 8:54 AM
Have you read the @hdbuzzfeed.bsky.social June 2025 update? HDBuzz share.google/zKHcUhxdYg35...
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...
If anti-fascism appeals please share this webinar, a tribute to #WoodyGuthrie
www.eventbrite.co.uk/e/when-bob-d...
When Bob Dylan met Woody Guthrie: The Guthrie Family Story
Presented by Anna Canoni (Woody Guthrie’s granddaughter and President of Woody Guthrie Publications)
www.eventbrite.co.uk
June 10, 2025 at 7:31 PM
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...
If anti-fascism appeals please share this webinar, a tribute to #WoodyGuthrie
www.eventbrite.co.uk/e/when-bob-d...
Reposted by Huntington's Disease Association of Ireland
Red Light, Green Light: How Huntington’s Disease Influences Genetic Traffic Lights
https://en.hdbuzz.net/435
https://en.hdbuzz.net/435
May 15, 2025 at 12:01 PM
Red Light, Green Light: How Huntington’s Disease Influences Genetic Traffic Lights
https://en.hdbuzz.net/435
https://en.hdbuzz.net/435
Reposted by Huntington's Disease Association of Ireland
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
May 15, 2025 at 8:25 AM
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
@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
‘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
Huntington’s Disease: ‘There’s been so much progress in terms of scientific research – we’ve been bringing it out of the shadows’
In January 1994, 34-year-old Emmy-winning NBC war correspondent Charles Sabine was about to fly to Prague to cover a story when he received a phone call that would change his life. His father, John, h...
shorturl.at
May 15, 2025 at 6:02 PM
@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
‘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 @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.
May 8, 2025 at 6:57 PM
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.
Reposted by Huntington's Disease Association of Ireland
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.
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.
April 17, 2025 at 10:21 PM
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.
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.
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...
@tcddublin.bsky.social
Huntington's Disease Research Day on May 9th.
#HuntingtonsDisease @evawoods.bsky.social @cpeelo.bsky.social
Registration Link forms.gle/hAjaRjo1Npmj...
April 8, 2025 at 9:44 PM
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...
@tcddublin.bsky.social
Huntington's Disease Research Day on May 9th.
#HuntingtonsDisease @evawoods.bsky.social @cpeelo.bsky.social
Registration Link forms.gle/hAjaRjo1Npmj...
Reposted by Huntington's Disease Association of Ireland
🗞️ 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
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
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
bit.ly
March 26, 2025 at 11:55 AM
🗞️ 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
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!
Who else is amped about the upcoming clinical trial updates from uniQure and PTC Therapeutics?!
Can we get a CHEE HOO?!
#brain #HuntingtonsDisease #ClinicalTrials #brain #Neuroscience #BrainHealth #MedicalResearch #GeneticDisorders #RareDisease #HDBuzz #LetsGo #cheehoo #Moana #Maui #BoatSnack
Can we get a CHEE HOO?!
#brain #HuntingtonsDisease #ClinicalTrials #brain #Neuroscience #BrainHealth #MedicalResearch #GeneticDisorders #RareDisease #HDBuzz #LetsGo #cheehoo #Moana #Maui #BoatSnack
March 26, 2025 at 6:44 PM
#HuntingtonsDisease #ClinicalTrials are something to cheer about!
Reposted by Huntington's Disease Association of Ireland
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
March 20, 2025 at 3:33 AM
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
Jimmy demonstrates the #HDGratitudeDay sign so you can practice for March 23rd! @jimmyplowell.bsky.social
March 21, 2025 at 7:51 AM
Jimmy demonstrates the #HDGratitudeDay sign so you can practice for March 23rd! @jimmyplowell.bsky.social
Reposted by Huntington's Disease Association of Ireland
Listen in to this #HuntingtonsDisease feature with Ivan Yates on Pat Kenny Show @newstalkfm.bsky.social today for #BrainAwarenessWeek
open.spotify.com/episode/52V7...
open.spotify.com/episode/52V7...
March 10, 2025 at 6:30 PM
Listen in to this #HuntingtonsDisease feature with Ivan Yates on Pat Kenny Show @newstalkfm.bsky.social today for #BrainAwarenessWeek
open.spotify.com/episode/52V7...
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
March 10, 2025 at 12:56 PM
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
Reposted by Huntington's Disease Association of Ireland
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
en.hdbuzz.net/409
March 5, 2025 at 8:58 PM
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
en.hdbuzz.net/409
Deputy Erin McGreehan
hosts the Neurological Alliance of Ireland
Oireachtas members briefing to call for action on neurorehabilitation @oireachtasnews.bsky.social #MyNeuroRehabTeam
#BrainAwarenessWeek2025
hosts the Neurological Alliance of Ireland
Oireachtas members briefing to call for action on neurorehabilitation @oireachtasnews.bsky.social #MyNeuroRehabTeam
#BrainAwarenessWeek2025
March 5, 2025 at 12:08 PM
Deputy Erin McGreehan
hosts the Neurological Alliance of Ireland
Oireachtas members briefing to call for action on neurorehabilitation @oireachtasnews.bsky.social #MyNeuroRehabTeam
#BrainAwarenessWeek2025
hosts the Neurological Alliance of Ireland
Oireachtas members briefing to call for action on neurorehabilitation @oireachtasnews.bsky.social #MyNeuroRehabTeam
#BrainAwarenessWeek2025
Reposted by Huntington's Disease Association of Ireland
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
February 26, 2025 at 8:09 PM
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
Reposted by Huntington's Disease Association of Ireland
Good to see a strong focus both on patients and clinical trials at the #IPHAconference2025.
#HealthResearchMatters
#HealthResearchMatters
February 26, 2025 at 2:15 PM
Good to see a strong focus both on patients and clinical trials at the #IPHAconference2025.
#HealthResearchMatters
#HealthResearchMatters
Reposted by Huntington's Disease Association of Ireland
Reposted by Huntington's Disease Association of Ireland
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.
February 25, 2025 at 4:36 PM
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.
Reposted by Huntington's Disease Association of Ireland
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!
Follow us on Bluesky so you don't miss out!
February 14, 2025 at 12:16 PM
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!
Follow us on Bluesky so you don't miss out!
Reposted by Huntington's Disease Association of Ireland
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 [email protected] with your comments and views!
Highlights include coverage of EHDN & Enroll-HD 2024 and an interview with the amazing Anne Rosser.
#HuntingtonsDisease #HDCommunity #RareDisease #ClinicalResearch
PM or email [email protected] with your comments and views!
November 26, 2024 at 1:31 PM
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 [email protected] with your comments and views!
Highlights include coverage of EHDN & Enroll-HD 2024 and an interview with the amazing Anne Rosser.
#HuntingtonsDisease #HDCommunity #RareDisease #ClinicalResearch
PM or email [email protected] with your comments and views!