Translating fragile x knowledge into action: a nfxf nationwide dissemination and education initiative supported by the centers for disease control and prevention - fragile x syndrome (FXS) is the most…

The Centers for Disease Control and Prevention awarded the National Fragile X Foundation a $200,000 cooperative agreement on September 30, 2026, under the Disabilities Prevention program (CFDA 93.184) to translate research findings into practical educational and support resources for people with Fragile X syndrome, their families, and healthcare providers.

The Foundation will update and expand its existing collection of Fragile X resources to reflect current evidence, conduct needs assessments, create and disseminate educational materials through multiple channels, and gather feedback for continuous improvement. The project will translate findings from CDC-funded FORWARD and FORWARD MARCH studies into practical tools and will help healthcare providers implement evidence-based information in Fragile X clinics and other care settings. Expected outcomes include stronger community partnerships, increased awareness of available resources, improved use of Fragile X data to guide public health efforts, and improved support and health outcomes for affected individuals and families.

The award runs through September 29, 2031, with place of performance in Washington, USA. The Disabilities Prevention program supports development, implementation, evaluation, and dissemination of non-research activities aimed at reducing health disparities and improving health outcomes for people with intellectual disabilities across their lifespans.

Translating fragile x knowledge into action: a nfxf nationwide dissemination and education initiative supported by the centers for disease control and prevention - fragile x syndrome (FXS) is the most common inherited cause of intellectual disability and a leading known single gene cause of autism. People with FXS, their families, and healthcare providers often say they need clear, up to date information about what to expect at different ages. Families also report that they need better tools to help them find knowledgeable providers and navigate services and supports throughout life. The national fragile x foundation (nfxf) has the largest collection of fragile x resources created with input from families and clinicians. This project will allow US to update and expand these materials so they reflect the most current information. These improvements will help families and healthcare providers get clear, reliable, and easy-to-use guidance. This project will make evidence based information, support, and services easier to access for people with FXS, their families, and healthcare providers across the country. Findings from forward and forward march studies, previously funded by the centers for disease control and prevention (CDC) will be turned into practical tools and educational materials. With support from the CDC, the nfxf will conduct needs assessments, create and update materials, share information through multiple communication channels, gather feedback, and continually improve our resources. The project will also help healthcare providers better support people with FXS and encourage wider use of evidence based information in fragile x clinics and other care settings. Expected results include stronger community partnerships, better use of FXS data to guide public health efforts, increased awareness of available resources, and improved support and health outcomes for people with FXS and their families.