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I like to talk about #pandemicPositive – there is plenty that has been hard(er) this year, but we have also seen lots of good. So, I polled my fellow staff members for some examples of the impact we all made this year through your support.
2020 Fragile X Conference Videos 19 important presentations, keynotes & panel discussions from the 17th NFXF International Fragile X Conference — Virtual Series. 2020 Fragile X Conference Videos [...]
RESEARCH REQUESTS International Fragile X Premutation Registry The International Fragile X Premutation Registry is a HIPAA- and GDPR-compliant registry created to aid researchers in the Fragile X premutation field. The [...]
March 3, 2021 The NFXF-Led Patient-Focused Drug Development Meeting for Fragile X Syndrome Voice of the Patient Meeting Report Meeting Recording — A recording of the entire meeting is now available, on demand. [...]
One of the most common questions related to Fragile X is what limitations does a person with Fragile x syndrome have? Meet Allison Cohen, Michael Cohen, Doug Cooper, Aaron Heisel, Samantha Rhodes, Joshua Rocker, Jodi Selinger, Spencer Shelton, and Cassie Stringer.
What can we do to take care of ourselves and to help others? A mother takes a step back to imagine what life during a pandemic looks like through the eyes of her son, who has Fragile X syndrome.
Our expert panel of Drs. Erickson, Berry-Kravis, and Hagerman discuss medications including what age anxiety medications should be considered, medications for aggressive behavior, and side effects.
Consensus of the Fragile X Clinical & Research Consortium Transition to Adult Services for Individuals with Fragile X Syndrome Reading Time: 38 min.—|—Last Updated: Dec. 2021—|—First Published: Dec. 2021—|—Download PDF Services [...]
The National Fragile X Foundation has created a social story to reflect the changing requirements that governments are enacting. There’s a lot of information — and misinformation — about COVID-19 out there, but there’s no doubt it’s impacted families in many, many ways.
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.
