We want to hear from you!  What makes you feel like you belong to the Fragile X community?  Make your voice heard and take our survey today!

Take survey (english)
tomar encuesta (español)

A sense of belonging within your community is crucial for mental and emotional well-being. When individuals feel connected to the people around them, they are more likely to experience higher levels of happiness, self-worth, and security.

Belonging fosters a supportive environment where people can share experiences, seek help, and contribute to a collective sense of purpose. It strengthens social bonds, reduces feelings of isolation, and provides a sense of stability and comfort. In addition, being part of a community promotes personal growth by encouraging collaboration, empathy, and understanding. Overall, the sense of belonging enriches lives and helps individuals thrive both personally and collectively.

But the question remains:  how do we make sure that everyone in our special Fragile X community feels like they belong to the community, especially those in underrepresented and underserved groups?

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The National Fragile X Foundation is committed to addressing the gaps in belonging in the Fragile X community and we are interested in understanding your experience(s) so we can take actionable steps toward ensuring that all members of our community feel like they belong.

This survey will ask you questions about:
  • Who you are
  • Diversity in Fragile X community and research
  • Your perspectives on “belonging”
  • How we (NFXF) can do better
It takes about 10 to 15 minutes to answer these questions. There are no right or wrong answers. You can choose not to answer any of the questions for any reason. Your responses will be anonymous. You must be 18 years or older to complete.
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There may be future opportunities to share your experiences in more detail. Examples of these opportunities include one-on-one interviews or group discussions. If you are willing and interested, there will be instructions at the end of the survey. This is not part of this survey study and is not required.
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We appreciate your time and feedback!
Take survey (english)
tomar encuesta (español)
Questions?

You can reach out to Anna De Sonia, Director of Research Facilitation, using the contact info below.

about
Anna De Sonia, Director, Research Facilitation.

Anna De Sonia
Anna joined the NFXF team in 2024 as Director of Research Facilitation.  She has many years of research experience, starting as a clinical research coordinator at Rush University Medical Center in Chicago in 2010.  There she worked on a variety of clinical trials in the pediatric neurology division, specializing in Fragile X research. Anna earned her bachelor’s in psychology and is a certified clinical research coordinator (CCRC®) through the ACRP (Association of Clinical Research Professionals). She loves spending time with her dog, traveling and exploring new cultures, listening to music, and enjoying time with friends and family.