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.
By providing customized tool kits we are ensuring each state’s individual needs are addressed. NC RDII also provides training on the necessity of the patient voice in health policy, renewing evidence on the impact of disease on person and society, developing evidence-based advocacy strategies and identifying best practices on leveraing media. We also develop and implement clinical and patient rare disease education programs. By supporting access that would improve the quality of life, we find that is the best opportunity to inject the patient voice.
Built on the Foundation of Success:
North Carolina Rare Disease Advisory Council
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
In the News: Rare Disease Research in NC
Aired on Sunday, April 5, 2020 on Spectrum
Segment 1: Rare Disease Research in NC (Part One)
Segment 2: Rare Disease Research in NC (Part Two)
Segment 3: Rare Disease Research in NC (Part Three)
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