Nate Milam II

Rare Diseases Legislative Advocates (RDLA) Committee Member and Young Adult Rare Representative (YARR), EveryLife Foundation for Rare Diseases at Patient Advisory Board Co-Chair and Ambassador, Histiocytosis Association

Speaker

Nate Milam II is a rare disease advocate, speaker, and policy influencer dedicated to driving systemic change. Diagnosed at 19 with Hemophagocytic Lymphohistiocytosis (HLH) after a 12-year Crohn’s misdiagnosis, he transformed pain into purpose. A bone marrow transplant saved his life, fueling his mission to amplify rare voices. As a Rare Disease Legislative Advocates (RDLA) Committee Member and Young Adult Rare Representative (YARR) at the EveryLife Foundation, Patient Advisory Board Co-Chair and Ambassador for the Histiocytosis Association, and a strong voice in numerous other rare disease spaces, Nate bridges policy, research, and lived experience to create a more equitable healthcare landscape. His story is one of resilience, impact, and unwavering determination.