The Next Generation of Rare Disease Advocate

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RARING

Matthew Zachary Worldwide

39 episodes

3 months ago

Welcome to RARING, the voice of the rare disease community and a no-BS forum for patients and their families, rare disease patient organizations, and medical professionals. If you live with a rare disease or love someone who does, RARING is the podcast for you, by you, and with you every day. Tune in to hear leading experts discussing next-generation diagnostics and treatments. Learn from passionate nonprofit leaders talking about their highs and lows fighting for their communities. And laugh and cry as real patients and caregivers like you share authentic and inspirational stories about their challenges and struggles to busy living. RARING: Because together, our voices are louder.

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The Next Generation of Rare Disease Advocate

RARING

31 minutes 59 seconds

4 years ago

The Next Generation of Rare Disease Advocate

Joining me today is Lewis Freese, an incredible young man fresh off the heels of being diagnosed with a rare disease during the pandemic, no less. (I mean, not that there's ever a good time for this to happen but COME ON!) The condition is called IGA Vasculitis and typically affects 2 in 100,000 children each year. As a college student, this threw everyone for a loop, and now Lewis has to spend the rest of his life managing chronic kidney disease, among other fabulous things. He is a genuinely authentic voice for our next great generation. He advocates not just for rare disease awareness but for inclusivity, speaking out as a vocal member of the LGBTQ community. With all that said, we've got a ton of stuff in common and bonded in real-time over the very meaning of advocacy, never accepting the status quo and living life to help others. Follow Lewis on Instagram at https://instagram.com/lewisfreese1. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.