Advocacy Groups Form Advisory Board to Help Researchers

Two patient advocacy groups have joined forces to present a unified voice when interacting with pharmaceutical companies and scientists looking to conduct in Angelman syndrome (AS) research.

This initiative of the Angelman Syndrome Alliance (ASA) and Angelman Syndrome Foundation (ASF), called the Global Community Advisory Board, will represent the Angelman syndrome community when providing scientific and policy-related consultation to those involved in the research, development, reimbursement, and service provision of biomedical therapies or processes.

“We are stronger when we work together to support the AS community,” said Amanda Moore, ASF CEO, in a press release. “We are so thankful to be invited to this strong partnership to further our work towards therapeutic treatments.”

The advisory board will be made up of trained advocates who will use their expertise to advise those involved in treatment development. In consultations, members will discuss the latest challenges and developments in the Angelman community, including hurdles and other issues related to therapies and procedures being developed.

“We are excited to work with ASF to be a constructive voice for all Angelman families,” said Betty Willemsen, ASA president. “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.”

The initiative is supported by Eurordis, a France-based alliance of patient organizations active in the field of rare diseases.

Based in the Netherlands, ASA is a partnership of organizations globally that work to support Angelman patients, their families and caregivers, and clinicians.

ASF seeks to advance the awareness and treatment of Angelman syndrome through education and research, and to provide support for patients and their families.

Angelman syndrome is a complex neurological genetic disorder that affects about one in 15,000 people. The disorder involves the nervous system and causes intellectual and physical disabilities, and seizures. There is currently no cure for Angelman and available treatments focus on controlling the seizures and managing the disease’s physical and behavioral symptoms.