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Translating Fragile X Knowledge Into Action: A NFXF nationwide dissemination and education initiative supported by the Centers for Disease Control and Prevention

Award Number: NU50DD000113
ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)
OPDIV: CDC
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: HEALTH SERVICES
PERIOD OF PERFORMANCE START DATE: 09/30/2026
PERIOD OF PERFORMANCE END DATE: 09/29/2031

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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.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $200,000 )
2026	2026	NATIONAL FRAGILE X FOUNDATION	1012 14TH ST NW STE 500	WASHINGTON	DC	20005	DISTRICT OF COLUMBIA	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	1	8/27/2026	NEW	$200,000
2026	2026	NATIONAL FRAGILE X FOUNDATION	1012 14TH ST NW STE 500	WASHINGTON	DC	20005	DISTRICT OF COLUMBIA	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	1	9/16/2026	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $200,000

Grand Total All Awards = $200,000

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Translating Fragile X Knowledge Into Action: A NFXF nationwide dissemination and education initiative supported by the Centers for Disease Control and Prevention

Award Number: NU50DD000113

ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)

OPDIV: CDC

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: HEALTH SERVICES

PERIOD OF PERFORMANCE START DATE: 09/30/2026

PERIOD OF PERFORMANCE END DATE: 09/29/2031

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