Angelman Syndrome Ireland

03/03/2026

💙 Calling All Families - ASTRAL Enrollment is now OPEN 💙

We are inviting families of children and young people (18 years and under) living with Angelman syndrome (AS) in the Republic of Ireland to take part in an important new research study led by Children’s Health Ireland (CHI)
✨ Every family’s experience matters. ✨
By enrolling in the ASTRAL study, you will help researchers better understand Angelman syndrome in Ireland, improve care pathways, and contribute to the development of future treatments and supports for individuals and families.
✨ Why take part?
• Help advance knowledge about Angelman syndrome in Ireland
• Contribute to improving services and supports in HSE
• Be part of meaningful research that could shape the future

We cannot do this without you. Participation from families across Ireland is essential. If you have ever wanted to make a difference for your child and for others living with AS, this is your opportunity to help drive real progress.

📩 Interested in learning more or signing up?
Please email [email protected] to receive full details about the study and how to enrol.

23/02/2026

📣 Family Conference 2026 update.

We are in the process of planning an amazing family conference programme, with something suitable for everyone: fun, friendships, talks & workshops, sibling support, circus skills, bubbles and thrilling theme parks. Chaotic mealtimes and sticky handprints galore.

Keep an eye out for emails and social media posts - Coming soon!

We are very excited and can’t wait to see you there!

📍The Doubletree by Hilton, Coventry CV2 2ST

📅 Friday 31st July - Sunday 2nd August 2026.

If you are NOT registered with us you will NOT receive an invitation to conference.
It’s free to register at Angelmanuk.org

15/02/2026

Today is International Angelman Syndrome Awareness Day 💙

A day that means so much to families like ours. Angelman Syndrome may be rare, but the strength, joy, and resilience of those living with it are truly extraordinary. Today we raise awareness, honour our children and loved ones, and continue to advocate for understanding, support, and better services.

We stand together, we educate, and we keep pushing for a more inclusive world.

14/02/2026

Happy International Angelman Day 2026🩵💙🩵💙 Post a picture of your amazing loved one in our private Facebook group so we can fill the page with smiles and celebrate our special community 🩵💙🩵💙

11/02/2026

Webinar: Sleep Matters
Date for your diary:
*Thursday 19th Feb *

Hosted by RCSI and FutureNeuro researchers and includes Dr Leah Loughlin who is an Angelman Syndrome researcher 💙

They will also discuss a sleep research study about to start in Angelman Syndrome and will be looking for families to sign up 💤

https://forms.office.com/Pages/ResponsePage.aspx?id=50FwYBKocEa9MDD52yEPBncjaJ9RRytAjq6w5zPMzlJUOTBDOVU5M1dWSFhTU1VXUks5UFdINTJXTSQlQCN0PWcu&origin=QRCode

24/01/2026

Lovely day attending the inaugural Rare Diseases Summit 2026 – Your Voice, Your Story, representing the Angelman syndrome community.

A powerful day of learning, collaboration, and connection, strengthening patient voices and advancing care for people living with rare diseases across Ireland. Thank you to
for organising

04/01/2026

We’d like to send a heartfelt thank you to Churchill GAA for selecting ASI for their 2025 Paudi Lynch tournament. Your generosity and community spirit mean so much to us, and we’re truly grateful for the support 👏

10/11/2025

The ASTRAL (Angelman Syndrome Translational Research Study) team from CHI were representing at the FAST gala in Orlando this week. This poster offers a great visual of the exciting project they’ve launched in 2025 to deepen our understanding of Angelman Syndrome in Ireland.

It was a wonderful opportunity to connect with our inspiring international community and share in the collective drive toward progress and hope! 💙✨

27/10/2025

💙 Thank You to Our Incredible Dublin Marathon Runners! 💙

A huge thank you to everyone who ran the Dublin Marathon this weekend in aid of Angelman Syndrome Ireland. Whether you’re a family member, a friend, or someone who simply chose to support us without knowing anyone personally - you are now part of the Angelman family.

Your strength, dedication, and compassion help bring awareness, hope, and support to families across Ireland affected by Angelman Syndrome. Every step you took, every mile you ran, and every euro you raised makes a real difference.

From the bottom of our hearts - thank you for running with love and purpose. 🩵🏃‍♀️🏃‍♂️

28/09/2025

Amazing to be part of this international community advocating for our families 💙

Today, representatives from 11 international Angelman syndrome organisations met to discuss future priorities for - Angelman syndrome alliance. Thank you Conny & e.V for hosting the meeting in Hamburg.

Together we are stronger.

ASA - Angelman Syndrome Alliance Angel - Associação Síndrome de Angelman Portugal Association Française du Syndrome d'Angelman Angelman Syndrome Ireland ORSA Organizzazione Sindrome di Angelman Asociace genové terapie, z.s. A.S.A. ASOCIACION SINDROME DE ANGELMAN - ESPAÑA Angelman e.V. Angelman Syndroom NL Angelman UK Mizukawa Masako Angelman Verein Österreich

www.angelmanalliance.org