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ASA and ASF Announce new joint initiative in forming a Community Advisory Board.

November 2020 The International Angelman Syndrome Alliance (ASA) and the Angelman Foundation (ASF) are delighted to announce details of a newly formed joint initiative: the Global Community Advisory Board. They will work together to represent the Angelman community as a unified voice when engaging with pharmaceutical companies looking to enter research programmes. The CAB will act as a consulting service to stakeholders involved in the research, development, reimbursement and service provision of biomedical treatments or processes, including both scientific and policy-related issues. Supported by Eurodis, the European organisation for Rare Disorders, the Angelman CAB will be a group of trained advocates who use their knowledge and expertise to discuss and advise on the latest developments, challenges and issues related to medical treatments and procedures under development in in Angelman Syndrome.

Speaking at the signing of the newly formed Board, Betty Willemsen, Chair of ASA said ”We are excited to work with ASF to be a constructive voice for all our Angelman families. This initiative will allow us to train our members in the area of research development to ensure the best outcomes for projects we are funding and supporting now and in the future. “ CEO, Amanda Moore of the Angelman Syndrome Foundation said. “We are stronger when we work together to support the AS community. We are so thankful to be invited to this strong partnership to further our work towards therapeutic treatments”. For further information - www.angelmanalliance.org Communication: Betty Willemsen (This email address is being protected from spambots. You need JavaScript enabled to view it.)