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A peer-reviewed paper has just been published that discusses a variety of recommendations at the level of preclinical development, the transition from preclinical to human projects, family involvement, and multi-site trial planning. The recommendations are made with the vision that effective new treatment will lie at the intersection of innovation, rigorous and reproducible research, and stakeholder involvement.
Halloween can offer challenges for children with Fragile X syndrome. Here we present activity ideas for you to consider, but the important point is to find what works for your family—and maybe it will lead to a new tradition.
Genetics & Inheritance Fragile X-associated disorders are passed down in families through a mutation in the FMR1 gene. The FMR1 gene is located on the X chromosome. Even for genetics professionals, FMR1 inheritance is [...]
A discussion of the upcoming conference including how to get the most out of your time, what to look for, and how to have a great time and connect with the community.
The NFXF is looking for 10 parents of children with a diagnosis of Fragile X syndrome, including both males and females, from all over the country, to participate in a market research opportunity related to [...]
Getting a diagnosis is hard. It’s really hard. There has been nothing else like it in my life and I cannot imagine there ever will be. It made me sad … really sad.
Individuals with a dual diagnosis of Fragile X syndrome and autism have reported greater cognitive and behavioral impairment. With Dr. Walter E. Kaufmann.
This is one more story about children who do not want to go poo … in the toilet. It is probably not for the faint of heart, though it does make you realize that you will do anything for your children.
Children whose development is affected by Fragile X syndrome are eligible for special education services. Part C of the Individuals with Disabilities Education Act (IDEA), a federal law, provides for services to children from birth [...]
While every Fragile X clinic is set up a little differently, they all offer similar services. They are staffed by people who understand Fragile X. Examples of evaluations offered at clinics through an initial intake include: medical, [...]
