We are a catalyst to educate, engage and equip the rare disease community to achieve enhanced quality of life and accelerate diagnosis and enabling access to treatments. We initiate and coordinate alliances with public and private institutions to achieve a future where rare diseases are rapidly diagnosed, understood and treated.
So how do we help our community? We do this by injecting patient voices at the heart of all initiatives. We have proven success ensuring successful launch of policy creation so all patients receive life saving therapies and enhanced quality of life.
Built on a Foundation of Success
3/25/15: Legislative breakfast to propose legislation to create NC Rare Disease Advisory Council hosted By Taylor’s Tale Foundation
4/14/15: Legislation filed in General Assembly, HB823
7/29/15: Legislation ratified by General Assembly
8/05/15: Billed signed into law
12/1/15: Appointments to council confirmed by NC DHHS Secretary
1/26/16: First NC Rare Disease Advisory Council meeting