Angelman Syndrome Ireland

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Angelman Syndrome Ireland

Angelman Syndrome Ireland supporting families and professionals in Ireland who care for those with AS.

Angelman Syndrome Ireland are here to offer support and guidance to people with AS, their parents and families, and professionals. Angelman Syndrome is a genetic disorder of chromosome 15 characterised by severe intellectual disability, lack of speech, sleep disturbance, and yet, usually a happy demeanour. Affecting 1 in every 15,000-20,000 people and based on our population there are currently approximately 350 people living with AS in 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 👏

Address

Dublin

Website

https://www.idonate.ie/168_angelman-syndrome-ireland.html

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