Welcome to the NC Rare Disease Network

Creation of NC Rare Disease Advisory Council Provides Unique Opportunities

“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…

News

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NC Rare Diseases Advisory Council Meetings

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 tjbritt@unc.edu

Link with map | View event listing

View minutes from this meeting

Rare Disease Day

 

 

 

NC Rare Disease Day Symposium Highlights and Summary

Read the Highlights and Summary
from the NC Rare Disease Day Symposium “Collaborating to Impact Patient Lives”  held at Syneos Heath Headquarters in Morrisville, NC, Feb. 29, 2019.

Syncs Health logo

 

Upcoming Event: Walk Run to Cure FSHD

Raising Funds to FIND the CURE for FSH Muscular Dystrophy

Date: Oct. 5, 2019
Location: NC State Talley Student Union
Time: Registration opens at 9am, Walk & Roll begins at 10am
Register to take part in the event HERE!  Learn more…

 

Call to Action

Ask Your Legislators to Co-Sponsor the OPEN ACT to Repurpose Drugs for Rare Disease Patients 

 

Visit the Every Life Foundation for Rare Diseases Open Act action page for an easy way to contact your legislators about this important legislation.

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.
read more…

Call to Action

Call on your legislators
to advance

#CuresNOW!

 

As a reminder, 21st Century Cures contains new funding for NIH and FDA, along with vital incentives to bring new treatments to patients including the OPEN ACT and an extension of the Rare Pediatric Disease Priority Review Voucher program.

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

read more…