Welcome to the NC Rare Disease Network
“The creation of the Rare Disease Advisory Council represents a unique opportunity for the UNC School of Medicine and others in North Carolina to serve the people of the state and beyond,” said Bruce Cairns, director of the North Carolina Jaycee Burn Center at UNC-Chapel Hill. “We strongly believe a partnership between advocacy groups including Taylor’s Tale, academic medical centers, the National Institutes of Health and others keenly interested in the diagnosis and treatment of rare diseases can be a model for the nation as we tackle some of the most challenging diseases affecting our citizens. We are grateful that the General Assembly has passed the bill and that Governor McCrory has now signed it. We are ready to get to work.” read more…
Date: June 4, 2019
Time: 1:15 – 3:15 PM
Place: I have reserved a conference room at the Frontier in RTP. Parking is easy and we are meeting in the Fusion Conference Room on the 1st floor.
For more information, contact Tara J. Britt, at firstname.lastname@example.org
Rare Disease Day
Call to Action
Ask Your Legislators to Co-Sponsor the OPEN ACT to Repurpose Drugs for Rare Disease Patients
Kyle Bryant & the ATAXIAN Movie Viewing
What an inspiration to meet Kyle Bryant and see The Ataxian movie this week. Unable to walk due to a neuromuscular disorder, Friedreich’s Ataxia, Kyle and team of friends attempt the most difficult and grueling bicycle race in the world.
Call to Action
Call on your legislators
Rare Disease Facts & Statistics.
- Approximately 7,000 rare disorders are known to exist and new ones are discovered each year
- One in 10 Americans is living with a rare disease
- Rare disease impacts more people than cancer and HIV combined
- In North Carolina, over a million people suffer with a rare disease
- Children represent the vast majority of those afflicted with rare disease