Welcome and thank you for your interest in sharing your experience!

This survey was adapted from the two Rare-X Surveys: Clinicians, Patient Advocacy Group Representatives, and Researchers & Rare Disease Patients and Caregivers.

The National Fragile X Foundation is committed to addressing the gaps in belonging in the Fragile X community. 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

For the purpose of this survey, it is important to note the following key terms and their definitions (adapted from Ferris State University):

We are defining diversity as the range of human differences, including but not limited to race, ethnicity, gender, gender identity, sexual orientation, age, social class, physical ability or attributes, religious or ethical values system, national origin, language, and political beliefs.

We are defining inclusion as involvement and empowerment, where the worth and dignity of all people are recognized. An inclusive community creates and keeps a sense of belonging; it values and practices respect for the talents, beliefs, backgrounds, and ways of living of its members.

We are defining belonging as the feeling as though you are an accepted member of a group. Whether it is family, friends, co-workers, a religion, or something else, people tend to have an 'inherent' desire to belong and be an important part of something greater than themselves.

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.

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.

If you have any questions, or concerns about the survey, please reach out to Anna De Sonia at anna@fragilex.org.

We appreciate your time and feedback!

By completing this survey, you agree that you have read and understand the information above.

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