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12 11, 2020

International Fragile X Premutation Registry

By |2023-12-11T17:28:17-05:00Nov 12, 2020|Comments Off on International Fragile X Premutation Registry

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 [...]

12 11, 2020

NFXF-Led Patient-Focused Drug Development Meeting

By |2023-11-03T12:51:45-04:00Nov 12, 2020|Comments Off on NFXF-Led Patient-Focused Drug Development Meeting

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. [...]

27 08, 2020

Fragile X Syndrome Self-Advocates Share Their Challenges and Triumphs — Presentation

By |2023-12-21T07:11:11-05:00Aug 27, 2020|Adulthood, Webinar Conference|Comments Off on Fragile X Syndrome Self-Advocates Share Their Challenges and Triumphs — Presentation

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.

1 08, 2020

COVID-19 Check-In: Month 5

By |2023-01-31T12:58:20-05:00Aug 1, 2020|Treatment & Strategies|Comments Off on COVID-19 Check-In: Month 5

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.

30 05, 2020

Discussion on Medications — Panel

By |2023-12-20T23:59:21-05:00May 30, 2020|Webinar, Webinar Conference|Comments Off on Discussion on Medications — Panel

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.

6 05, 2020

Transition to Adult Services for Individuals with Fragile X Syndrome

By |2022-11-02T08:49:40-04:00May 6, 2020|Comments Off on Transition to Adult Services for Individuals with Fragile X Syndrome

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 [...]

27 04, 2020

A COVID-19 Social Story from NFXF

By |2021-01-05T18:48:26-05:00Apr 27, 2020|Treatment & Strategies|Comments Off on A COVID-19 Social Story from NFXF

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.

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