NFXF Webinar Series: Gene Therapy & the FXS Community: A Review of Community Surveys

Join us as we hear from Anna De Sonia, Sarah Eley, Dr. Rey Lozano, Vivian Chen, and Dr. David Hampson as they discuss the preliminary results from their community surveys on gene therapy.

Researchers are interested in knowing where the FXS community stands on gene therapy - the thoughts, feelings, knowledge, concerns, and hopes. There have been many recent surveys this year that set out to understand this deeper.  This webinar will dive into the surveys and their overall findings.  The webinar will be a one-hour presentation with time for Q&A at the end.

Anna De Sonia will discuss the NFXF’s mini-survey that was launched earlier this year; Sarah Eley, a research nurse and coordinator in the UK, will bring a unique perspective discussing her UK survey; Dr. Rey Lozano and student Vivian Chen will discuss their gene therapy community survey; and Dr. David Hampson will help summarize overall findings and explain the data in more depth, pointing out common themes and trends.

Participants can review the Gene Therapy Panel Discussion from the 19th NFXF International Fragile X Conference before the webinar.

Come prepared with your questions or you may also submit your questions in advance by emailing contact@fragilex.org and during the webinar.  We will do our best to answer as many questions as possible. 

We look forward to you joining us!

The webinar will be recorded and available to all registrants.