RARE Pride Survey Summary
Check out the Pride in Rare Survey Summary that gauged experiences, resource needs, and opportunities to better serve the LGBTQIA+ rare disease community.
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About the Survey
In June 2024, the RARE Foundation released the first RARE Pride survey, which was open to people who live in the United States, are 18 years of age and older, have at least one rare disease, and identify as LGBTQIA+.
A total of 80 respondents from 25 states completed the survey, ranging from 18 to over 60 years of age.
What are some policy issues impacting the LGBTQIA+ rare disease community?
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41%
Stated their inability to access insurance coverage or high-quality insurance coverage.
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21%
Stated their inability to travel across state lines to access care from an LGBTQIA+ friendly doctor knowledgeable about their rare disease.
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47%
Stated having trouble interacting with health care providers due to their identity.
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50%
Stated that hospital
intake forms are not inclusive of all sexual orientations or gender identities (SOGIs).
Providers are often wary of prescribing the treatments I need (including steroids) for my intersex variation due to a lack of knowledge and appropriate standards of care since it is such a rare condition without a well-established patient advocacy organization.
Survey respondent
