ASA - Angelman Syndrome Alliance

A global collaboration of independent Angelman organisations. Research powered by parents. Please do get in contact if you are interested in membership.

The Angelman Syndrome Alliance – Manifesto

Pioneers in scientific research
The Angelman Syndrome Alliance (ASA) is a partnership of organizations from around the world that are focused on supporting people with Angelman Syndrome, their loved ones, carers and clinicians. By combining resources, knowledge and a relentless dedication to initiate change, the ASA is uniquely positioned to drive advanc

es in scientific knowledge about Angelman Syndrome. As a rare disease, funding for scientific research from major funders is limited. The ASA is breaking new ground, utilizing limited resources from around the globe in a smarter manner. By combining financial resources we can fund research that individually our organisations could not. The ASA is registered in the Netherlands at the Chamber of Commerce under the number 75110830 with the RSIN number 860146583

The post address of the ASA is:
Proveniersstraat 5b
3033 CE ROTTERDAM
Netherlands

ASA Board

Betty Willemsen - President of ASA
Peter Sel - Vice-President of ASA
Manuel Trocado Costa Duarte - Treasurer of ASA

The Scientific Advisory Board (SAB)

Professor Hanoch Kaphzan, University of Haifa
Professor Martin Scheffner, University of Konstanz
Professor Harald Sitte, Medical University of Vienna

The role of the SAB is to oversee the review of grant applications, and to offer advice and guidance to the ASA Board and ASA members. ASA Members

The members contribute funds to the research grants provided by the Angelman Syndrome Alliance. Many other organisations attend our annual meetings and contribute through suggestions and guidance. ASA Associates

Parent organizations that want to become a full member but do not have the necessary means yet, are welcome as Associate members. As an associate you inform interested parties in your country about ASA projects (AS parents, therapists, doctors and scientist ), you to make a list of all important Angelman Syndrome researchers in your country and send it to the scientific board of ASA, and you make a noticeable effort to gather funding so you can participate as a full ASA member in the next round (which is every 2 years, so 2016-2018-2020 and so on). In every country there can be only one parent organization as a representant within ASA. All of the funds gathered by the ASA are going to our cause, this means that all the people that work for the ASA do so on a pro deo basis, they receive no salary or compensation other than the feeling of knowing they contributed to our cause.

Photos from ASA - Angelman Syndrome Alliance's post

05/10/2025

10 years ago this weekend, Angelman UK hosted the 4th ASA - Angelman Syndrome Alliance scientific conference in Liverpool, England, as well as a gala in recognition of what would have been Harry Angelman’s 100th birthday! Families heard about Angelman research from international scientists, and were entertained in the evening by our patron Gareth Edwards, along with relatives of Harry Angelman. Such an amazing & memorable weekend!

30/09/2025

⏰ Final Call – ASA Grant 2026

The deadline for our 6th international scientific grant call is November 1, 2025.

This grant exists because of you — families and friends across the world who united to raise funds for Angelman Syndrome research.

Now we ask for your help one more time:
👉 Please share the grant call with scientists and research teams.
👉 Spread the word in your networks.
👉 Help us reach every researcher who could make a difference.

Together, we can ensure the brightest minds apply and move us closer to treatments. 🌍✨

🔗 Full details & how to apply: angelmanalliance.org/asa-2026

27/09/2025

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

Angelman Syndrome Phase 3 Clinical Trial Update - hosted by FAST & ASA

18/09/2025

💙 Angelman Syndrome Phase 3 Trials – Community Update 💙

Earlier this month, Foundation for Angelman Syndrome Therapeutics and ASA - Angelman Syndrome Alliance co-hosted a community webinar to share updates on the ongoing Phase 3 trials for Ultragenyx (GTX-102) and Ionis (ION-582).

Families will find practical information on study designs, age groups, timelines, and what participation in a trial may involve.

❗️Every child and family is unique. Clinical trials are still evaluating investigational medicines, and participation is a deeply personal decision. Please discuss any questions with your doctor or medical team before considering enrollment.

You can read more about it ⬇️.
https://angelmanalliance.org/community-update-phase-3-trials-ultragenyx-ionis/

📺 You can watch the full webinar here: https://youtu.be/TenTbLp9pIk

Angelman Syndrome Phase 3 Clinical Trial Update - hosted by FAST & ASA ANGELMAN SYNDROME PHASE 3 TRIALS — COMMUNITY UPDATE (Webinar recorded: 4 Sep 2025)WHO HOSTED• FAST (Foundation for Angelman Syndrome Therapeutics): \$60M+ in...

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http://www.angelmanalliance.org/

Adres

Proveniersstraat 5b
Rotterdam
3033CE

ASA - Angelman Syndrome Alliance

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