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Roughly one in 10 Americans are affected by a rare disease. That number further compounds when accounting for the individual rare features that can present in a single disease, thus making an even more sizable impact on the overall population in the US. Living with a rare disease or caring for a loved one with one can often feel isolating. With limited access to medical professionals who are well-versed in the specifics of rare conditions, many individuals turn to disease-related support groups (DRSGs), especially those on social media, to gather information, share experiences, exchange advice, and seek emotional support. These groups, often centered around specific conditions, provide invaluable spaces where participants can connect with others who understand their unique struggles.
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