Today, we want to share an important update regarding the Externally-Led PFDD meeting on Angelman syndrome scheduled for January 29th, 2025.
Due to ongoing transition activities under the new administration and new directives for the Department of Health and Human Services (HHS), FDA employees are unable to attend external meetings at this time. Unfortunately, this directive includes our upcoming EL-PFDD meeting on Wednesday, January 29, 2025. As FDA participation is essential to the success of our event, we have made the difficult decision to postpone the meeting to ensure it achieves the impact it deserves.
While we know this is disappointing, we want to assure you it is an opportunity to make the EL-PFDD meeting even stronger. We want to ensure the full weight of the Angelman community’s voices are heard by key decision-makers and that the program delivers the meaningful outcomes we are all working toward.
We are focused on securing a new date and will keep you updated as details come together. The delay only strengthens our commitment to creating a platform where your experiences, perspectives, and hopes can shape the future of treatments and care for Angelman syndrome.
Your voices matter and this delay will not diminish their impact—it will amplify them. Thank you for your understanding, support, and unwavering advocacy.
We will keep you informed every step of the way. If you have any questions, please don’t hesitate to reach out to us at ASPFDD@Angelman.org
Sincerely,
Amanda Moore & Ryan Fischer