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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.