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.
Events in Delaware
Are there events happening in your State? Share your event Here
Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Delaware’s RareAction Network to attend your event? Contact the NORD Rare Action team today and learn more. Please check back regularly for news of upcoming events and activities in Delaware.
Events Recap Gallery
