On June 11, 2024, Global Genes hosted a forum for stakeholders in the rare disease community to discuss their intersectionality as part of both the rare community and queer / LGBTQIA + community. Below is what one of the speakers, Jas Madhavan, had to say:
See what others had to say during this session:
Jas is 33 years old and is the GBS-CIDP Foundation’s Liaison for Utah. Born and raised in southern India, he holds Bachelors and Master’s degrees from the Massachusetts Institute of Technology (MIT) in the fields of Planning and Development. Jas’s journey and struggles with a rare autoimmune neuropathy known as CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy) began during his time in college, followed by several years of diagnostic uncertainty and declining health. He was finally able to obtain a definitive diagnosis and access to life-changing treatment, thanks to the support offered by the GBS-CIDP Foundation. Currently on his journey towards recovery, he is strongly motivated to support people from all walks of life facing similar challenges with not only rare autoimmune neuropathies, but rare medical conditions as a whole. Jas is acutely aware of the unmet needs present at the intersection of queer identities and the rare disease space. He is motivated to build a support network for the rare queer community, with a strong emphasis on self-advocacy, pragmatic problem solving, navigating social circles and expanding awareness on rare medical conditions.
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