Delaware

State Ambassador: Irfan Patel

Irfan serves as the Rare Action Network (RAN) Ambassador for Delaware and is a member of the Delaware Rare Disease Advisory Council. He is a dedicated advocate for individuals and families affected by rare disorders, driven by deeply personal experience. Irfan and his wife, are parents to four children, two of whom have rare metabolic conditions, and he himself has been diagnosed with a rare form of MMA. Motivated by lived experience, he has championed initiatives such as adding organic acidemia to Delaware’s newborn screening program. In recognition of his impact and leadership, he received the 2024 Rare Impact Award from NORD.

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Events in Delaware

Are there events for the rare disease community happening in your state? Email [email protected] to share your event with us.


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