Belonging in Fragile X: A Survey Addressing Diversity, Equity, and Inclusion in the Fragile X Community

We want to hear from you! Make your voice heard and take our 10-minute survey today!

We are inviting you to help us tackle a complex topic by providing us with your invaluable input. Your thoughts and experiences will help us inform how we can break down existing barriers, so that every member of our community feels like they truly belong.

We know there are no racial or ethnic bounds to Fragile X. But right now, the families going to FXCRC clinics and interacting with the NFXF are not representative of the entirety of the Fragile X community.

We know we are not reaching the entire Fragile X community, and we want to identify and understand what barriers exist so we can actively break them down. To have a true sense of community, everyone must feel like they belong. 

A sense of belonging is important to feeling like part of a community. Belongingness is the human emotional need to be an accepted member of a group. Whether it is family, friends, co-workers, a religion, or something else, some people tend to have an “inherent” desire to belong and be an important part of something greater than themselves.

Belonging is when each member of the community is treated and feels like a full member of that community. Belonging is the foundation to diversity, equity, and inclusion. 

This is important work, and we believe it is an issue across the Fragile X community that we can solve together. The NFXF is committed to addressing the gaps in belonging in the Fragile X community and we are interested in understanding your experiences so we can take actionable steps toward ensuring that all members of our community feel like they belong. 

• Who you are
• Diversity in Fragile X community and research
• Your perspectives on “belonging”
• How we — the NFXF — can do better