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 advances 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.
