Now Enrolling! Tetra Therapeutics Shares Details of FXS Trials in a Short Video
Tetra Therapeutics Shares Details of the Now Enrolling FXS Trials in a Short Video.
Study: A Family Genetic Study of Autism and Fragile X Syndrome
The Neurodevelopmental Disabilities Lab at Northwestern University is conducting a research study to learn about how the genes involved in Fragile X syndrome may play a role in language development, cognitive differences, and more.
Study: Aging in Mothers who Carry the FMR1 Premutation
The University of South Carolina is conducting a research study to learn about healthy aging in women who carry the FMR1 premutation.
NFXF and FXAA Fragile X Premutation Terminology Survey
Help the NFXF and FXAA- share your opinion of common Fragile X premutation terminology by completing this quick survey.
My Fragile X Advocacy Journey
NFXF Director of Community Empowerment, Missy Zolecki, shares her recent experience as a consumer reviewer for the Department of Defense Peer Reviewed Medical Research Program
Study: Autonomic and Sensory Functioning in Infants with FMR1 Conditions
Dr. Jane Roberts and the research staff at the Neurodevelopmental Disorders Laboratory at USC are conducting a research study to learn about the development of infants with Fragile X syndrome and Fragile X premutation over the first few years of life.
Study: Aging in Toolbox
Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.
Study: Connection between Cognition and Genetic Factors in Adults with FXS
Drs. Craig Erickson and Lauren Schmitt at Cincinnati Children’s Hospital are conducting a series of research studies to learn about the brain and cognition and how they are connected with genetic factors related to FXS.
Study: UNC Brain Development Research Study of Infants with Fragile X Syndrome
UNC Chapel Hill is conducting a research study to learn about the early brain and behavioral development of infants with FXS to aid in the future development of better supports and treatments.
Randi J. Hagerman Summer Scholar Research Awards
Randi J. Hagerman Summer Scholars Research Awards The Randi J. Hagerman Summer Scholar Research Awards will fund one or more summer students’ research at $2,500 each. Student work can be focused on Fragile [...]
Clinical Trial RECONNECT: ZYN002 Gel
This study will evaluate the efficacy and safety of ZYN002, a clear gel that can be applied to the skin (called transdermal application) twice a day for the treatment of behavioral symptoms of Fragile X syndrome (FXS).
NFXF Webinar: 2021 Industry Updates
We held an NFXF Webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
How Clinical Trials Work: From Start to Finish
A guide to better understanding of clinical trials, including how they work and how to become a participant.
PFDD Meeting Community Forum
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.
Boston Children’s Hospital Study: Neural Markers in Fragile X Syndrome
The purpose of this study is to improve our understanding of how differences in brain activity affect learning, language, and behavior in children with Fragile X Syndrome.