By Hilary Rosselot
The Patient-Focused Drug Development (PFDD) meeting for Fragile X syndrome is just around the corner (March 3, 2021)! We need caregivers and self-advocates to participate to make this a valuable meeting. I realize you may not be sure what to expect, are nervous about sharing your story, or don’t understand what the point is.
On Wed., Jan. 20, 2021, we held a community forum to share more about what to expect during and after the PFDD meeting, with details on how to participate and prepare. Additionally, we shared what outcomes we might expect from the meeting — why it’s important for Fragile X parents, caregivers, and self-advocates to share about what is most important to them in relation to drugs and treatments.
Drs. Randi Hagerman, Liz Berry-Kravis, and Craig Erickson shared more on why this meeting will make a difference for Fragile X.
We hope those who attended and those who view it later will feel excited, informed, and ready to share your story.
You can view the recording below and view the slides here. For more information, please contact Hilary Rosselot, the NFXF Director of Research Facilitation.
To register to attend the meeting on March 3, 2021, please visit our PFDD meeting page.