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Blog2020-09-08T11:03:26-04:00

The NFXF Blog

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PFDD Meeting Community Forum

By |Jan 21, 2021|

The Patient-Focused Drug Development (PFDD) meeting on Fragile X syndrome is just around the corner! We need caregivers and self-advocates to participate to make this a valuable meeting. This will help you understand what to expect and what the goal is and how to share your story.

The good stuff from 2020 (no really there is some)

By |Dec 15, 2020|

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.

Webinar: Adults in Fragile X Syndrome

By |Dec 10, 2020|

Dr. Elizabeth Berry-Kravis discusses the value of the FORWARD database for understanding problems that face adults living with Fragile X syndrome. We also talk about how families of adults can contribute to FORWARD and our understanding of adults with FXS by doing a research-only remote visits with a FORWARD clinic to increase the data pool for adults with FXS in FORWARD.

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