The Angelman Syndrome Alliance is registered in the Netherland at the Chamber of Commerce under the number 75110830 with the RSIN number 860146583
The post address of the Angelman Syndrome Alliance is: Proveniersstraat 5b 3033 CE ROTTERDAM Netherlands
The founding documents like Founding Document, Code of Ethics, Policy and Guidelines and the Funding Plan can be found here ASA Founding Documents
Since 16th December 2022 new board:
Manuel Trocado Costa Duarte (Portugal) - President of ASA
Conny Schendler (Germany) - Vice-President of ASA
Thomas Schramm (Austria) - Treasurer of ASA
Katie Cunnea (England) - Research
Emanuele Bedon (Italy) - Secretary
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.
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.
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. Please do get in contact if you are interested in membership.
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.
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.
Angelman Syndrome needs answers The current worldwide crisis in healthcare calls for changes that challenge the fundamental dynamics of our organisations: to reduce spending while maintaining quality and searching for therapies for Angelman Syndrome. Together and individually all partner organisations and their members (predominantly parents and siblings of people with Angelman syndrome) have played a key role in transforming knowledge about AS over the past 5 decades. There have already been major breakthroughs in our understanding of AS, and advancements in the past few years have enabled us to believe that a treatment is within our reach that could significantly improve the lives of individuals with AS.
A formidable combination of resources Our mission is to grow and support scientific knowledge about AS that can create fundamental and lasting changes in therapy for patients with Angelman Syndrome; so that parents, therapists and clinicians can improve the quality of life of those with AS. We have a progressive philosophy about the way we combine our resources to form an equal partnership. Every partner of the ASA contributes whatever funds they can. We work as equals and support each other, and in turn are supported by our organisations’ members, the AS family community. Unity and maintaining a simple structure is important and so only one organisation from each country participates in ASA.
Identifying and developing treatments for Angelman Syndrome Together we identify research that challenges our knowledge of AS today, to enable us to develop solutions for future therapies. ASA has a Scientific Board, a group of volunteer scientists, who advise us and support our goals. The alliance focuses its investments on innovative science, with our ultimate goal to find therapies for patients with Angelman Syndrome.