Description
Join us on Rare Disease Day, Thursday, February 29 at 11:30 a.m. ET for the #RAREis One webinar to hear storytellers from around the world who are navigating life with a rare disease, supporting a loved one through their health journey and advocating for change in the rare disease community.
The discussion will be moderated by Michelle Rivas Notestine, senior manager, communications, Amgen and features:
– Anton Morkin, founder and CEO, TBX4Life
– Daniel DeFabio, director of community engagement, Global Genes, co-founder of the DISORDER Channel and Menkes Syndrome dad
– Dorthea Lantz, director of community engagement, Prader-Willi Syndrome Association USA
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