By Dany Petraska|2021-12-08T13:59:33-05:00Nov 30, 2020|
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 [...]
By Dany Petraska|2023-12-11T17:28:17-05:00Nov 12, 2020|
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 [...]
By Dany Petraska|2023-11-03T12:51:45-04:00Nov 12, 2020|
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. [...]
By Marcia Braden|2023-12-21T07:11:11-05:00Aug 27, 2020|Adulthood, Webinar Conference|
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.
By Jayne Dixon Weber|2023-01-31T12:58:20-05:00Aug 1, 2020|Treatment & Strategies|
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.
By Jayne Dixon Weber|2023-12-20T23:59:21-05:00May 30, 2020|Webinar, Webinar Conference|
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.
By Dany Petraska|2022-11-02T08:49:40-04:00May 6, 2020|
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 [...]
By NFXF|2021-01-05T18:48:26-05:00Apr 27, 2020|Treatment & Strategies|
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.
By Barbara Haas-Givler|2023-12-21T00:11:57-05:00Apr 22, 2020|Daily Living, Treatment & Strategies, Webinar, Webinar Conference|
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.
By Rebecca Shaffer|2023-06-14T16:28:55-04:00Apr 1, 2020|Behavior, Daily Living|
In this webinar, Rebecca Shaffer walks us through what your child is telling you, strategies to prevent the behavior, reinforcing good behaviors, and building new skills.