Reproductive Health and Your Options
Reproductive Health and Your Options There is no one way to grow a family. Whether you know you carry a gene that can be passed on to your future children and want to explore [...]
27
08, 2023
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27
06, 2023
Our Advisors
The NFXF Scientific & Clinical Advisory Committee The NFXF's Scientific and Clinical Advisory Committee (SCAC) is a group of clinical and research professionals who are thought leaders in the Fragile X field. [...]
28
03, 2023
My Experience at Advocacy Day
Jaleesa Holden, NFXF Communications Manager, shares her experience as a first-time advocate at NFXF Advocacy Day 2023.
24
02, 2023
2023 Advocacy Day Asks
NFXF Advocates head to Capitol Hill to ask for ongoing federal funding for Fragile X research and legislation to support telemedicine
25
10, 2022
Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives
Most individuals with FXS cannot state themselves that they are anxious and self-report is needed in current standardized assessments. The information analyzed in this study will result in the development of a measure where observable and quantifiable data on anxiety in those with FXS can become an outcome measure to be used in future research/trials.
20
10, 2022
Mosaicism in Fragile X Syndrome
Consensus of the Fragile X Clinical & Research Consortium Mosaicism in Fragile X Syndrome Reading Time: 18 min.—|—Last Updated: Oct. 2022—|—First Published: Oct. 2022—|—Download PDF Mosaicism Size Mosaicism Methylation [...]
24
08, 2022
American Academy of Pediatrics Hosts New Course on Fragile X syndrome
AAP/CDC course, "Identification, Management, and Caring for Children and Adolescents with Fragile X Syndrome" will be available for pediatricians and other healthcare professionals through August 1, 2025, on the AAP PediaLink platform.
17
07, 2022
Fragile X Medications — Panel
Hilary Rosselot moderates this discussion on medications for Fragile X with an expert panel that includes Drs. Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, Reymundo Lozano, and Nicole Tartaglia.
16
07, 2022
Experts Discuss Females with Fragile X Syndrome — Panel
Experts in the field discuss support and solutions for females with Fragile X in this panel discussion and Q&A. Join Jennifer Barber, Susan Howell, Barbara Haas-Givler, Nicole Tartaglia, Rebecca Shaffer, and Laurie Bridges.
4
05, 2022
Seizures in Fragile X Syndrome
Consensus of the Fragile X Clinical & Research Consortium Seizures in Fragile X Syndrome Reading Time: 51 min.—|—Last Updated: April 2022—|—First Published: June 2011—|—Download PDF General Seizure Information: [...]