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Rare Disease Conference 2024 - Rare Disease Summit
March 18-20, 2025
Pre-Conference Workshops on March 17, 2025Sheraton Philadelphia Downtown | Philadelphia, PA

Amanda Moore
CEO at Angelman Syndrome Foundation


Amanda Moore has served as the CEO of the Angelman Syndrome Foundation since 2019. She spent most of her career working in nonprofit leadership and development for the YMCA. In 2015, Amanda and her husband Adam were blessed with adopting twin boys Jackson and Baden. In 2016, Jackson was diagnosed with Angelman Syndrome and at that time Amanda vowed to take action to do what she could for Jackson and individuals like him. She served on the Angelman Syndrome Board for one year and now is serving in the role as CEO of the Angelman Syndrome Foundation.

Agenda Sessions

  • The How To Behind Partnership, Funding and Development

  • Optimizing Industry and Advocacy Collaboration to Best Serve the Patient