Huntington's Disease Association of Ireland

08/04/2026

Dr. Jeff Carroll reveals new discoveries from his recent mouse research that are turning some assumptions about huntingtin-lowering upside down. Join us to hear what his team discovered, and what it could mean for therapies and current clinical trials.

Thursday, April 16, 2026
12-1pm ET
The Science (and Surprises) around Lowering the Huntington Protein

Jeff Carroll, PhD, University of Washington
Recipient of 2025 Leslie Gehry Prize for Innovation in Science

A live Q&A will take place following the webinar.

Register now: https://us06web.zoom.us/webinar/register/3617655132190/WN_ofC1UhkfSSG1A8_FbtGaaQ

HDYO (Huntington's Disease Youth Organisation) HDBuzz Factor-H American Brain Coalition Philly Cure HD (Huntington's Disease) Erin Paterson Huntington Study Group Huntington's Disease Society of America Huntington Society of Canada Champions for HD European Huntington Association Rare Patient Voice University of Peshawar

03/04/2026

👉 Help the neurodegenerative diseases community by completing the new IDEA-FAST survey: https://ec.europa.eu/eusurvey/runner/IDEA-FASTClinicalCareSurveyforPatients

The IDEA-FAST project is a research study across Europe that is looking at how digital tools (wearable devices, mobile apps, sensors) can help track and better understand symptoms in everyday life in several diseases.

The project coordinators have launched a survey for people living with chronic conditions, including HD.

By hearing it from the people who actually live with a condition every day, researchers can understand what really matters to the community and how to give a better use to these technologies.

• Survey length: ~15 minutes
• Responses: anonymous & secure
• Goal: to co-create better digital health solutions, designed with patients, for patients.

Take part today and help shape the next generation of digital care tools. 🤍

03/04/2026

Hope is more than just a feeling - it’s about taking action every day. At HDYO, we see this kind of hope in young people and families affected by Huntington’s disease. They show resilience, courage, and strength. Opportunities like HDYO’s International Congress bring young people together, providing a space to learn and connect. Your support can help make a difference. Consider donating to HDYO today.

👉https://huntingtons.enthuse.com/profile/

03/04/2026

26/03/2026

Dancing is a great way to exercise!

All Irish Dance offer certified inclusive adaptive céilí Dance Leader training in Dublin and in Galway .

Full details for both courses are available here: https://allirishdance.com/training-workshops/

☘️ APPLICATIONS OPEN ☘️

🎉 Certified Inclusive Adaptive Céilí - Dance Leader Training 🎉

📆 Dublin: 2nd to 4th May
📆 Galway: 30th May to 1st June

✅ No dance experience needed!
✅ Suitable for anyone who wants to bring joy to their local community including:
- Allied health professionals
- Care workers
- Community-based workers
- Dancers/dance teachers (all genres)
- Fitness, health & wellbeing instructors
- School teachers/SNAs
- Sports leaders & coordinators
- Volunteers in the community
- Youth workers

ℹ️ Full details:
https://allirishdance.com/training-workshops/

🚨 Limited places available 🚨

25/03/2026

Uachtarán na hÉireann / President of Ireland Catherine Connolly and her husband Mr. Brian McEnery welcomed carers to a special reception in Áras an Uachtaráin today to pay tribute to the many individuals and groups around the country who give their time and energy to care for others.

Representatives from the community were delighted to attend and meet our President.

This is a well deserved acknowledgement for family members who support loved ones living with HD, a complex neurodegenerative illness.

23/03/2026

HDBuzz share a researcher's perspective on what can continue to offer in understanding and repairing the brain

23/03/2026

The awareness campaign demonstrates the valuable role specialist nurses plan in supporting patients and their families.
Physical, cognitive and psychological symptoms pose barriers for many people living with neurological conditions to avail of services.
Specialist nurses aim to provide person centered care to support people living with neurological conditions and their families.

Promoting awareness of the role of the specialist nurse in neurological care.

21/03/2026

One test can bring answers, but also many emotions, questions, and consequences.

In this new article, our volunteer Jannik reflects on the complex reality of predictive testing for Huntington's Disease: the weight of knowing, the impact on family relationships, and the difficult choices that often come with it.

A thoughtful piece about uncertainty, responsibility, and how one result can affect much more than a single person. 💙

Read the full article here https://bit.ly/4lJ6txY

21/03/2026

is a tribute to families who have contributed to research.

Their participation has brought us to where we are today with many international HD trials now in progress.

Discovering the HD gene also allows family members at risk to choose PGT and avoid passing on the disease.

Huntington's Disease Foundation
Factor-H

In March 1993, the gene for Huntington’s disease was identified through a collaboration of HDF, worldwide scientists, and the selfless contributions of Venezuelan HD families. Factor-H, a charity organization dedicated to supporting these HD families, launched “Gratitude Day” on March 23rd as a way of honoring the families who made the discovery possible.

Factor-H is hosting a live-streaming event on YouTube with the HD families of Venezuela on Sunday, March 22, 2026:

9am PST/10am Mexico/12pm EST/1:00pm Argentina, Brazil, Chile /4pm UK/5pm Europe.

Visit Factor-H’s website to learn more and register: factor-h.org

Post your Gratitude Day pictures on IG

21/03/2026

brings focus to the 860,000 people in Ireland living with a neurological condition.

1 in 3 of us will experience a neurological condition in our lifetime.

Greater awareness and understanding is needed to increase investment in services, research and prevention.

Thank you to Neurological Alliance of Ireland (NAI) for leading this initiative.

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

21/03/2026

💡Whether you like pop, rock, or country, your favourite tunes can stimulate different parts of your brain🧠, which is why it brings back special memories and affect how we feel.

Listen to your favourite songs and have a boogie! 🎸🕺

If you want to see more brain tips, follow us throughout this and have a look at our page to