The Next Generation of Rare Disease Advocate
RARING
English - October 27, 2021 04:00 - 31 minutes - 29.3 MBMental Health Health & Fitness Business Non-Profit rare cancer coalition nordpod rare disease community digital health community living rare rare diseases rare cancer day rare disease day living strong Homepage Download Google Podcasts Overcast Castro Pocket Casts RSS feed
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.
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