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 Disease Advisory Council meetings

Date: TBD
Time: TBD
Place: TBD

For more information, contact Tara J. Britt, at tjbritt@unc.edu

Rare Disease Day

 

 

 

NC Rare Disease Day Event

Date And Time
Sat, March 16, 2019 @ 12:00 PM – 2:00 PM EDT

Location
White Plains United Methodist Church
313 SE Maynard Rd, Cary, NC 27511
View Map

This Rare Disease Day Event is welcome to anyone looking to connect with other patients, learn more about rare diseases, or just have something fun/educational to do on a Saturday! This is a family-friendly event with plenty of food, drinks, games, and speakers. Learn more…

 

Upcoming Event: Raleigh Rare Run

2019 Run Walk LogoDate And Time
Sat, March 16, 2019 @ 12:00 PM – 2:00 PM EDT

Location
White Plains United Methodist Church
313 SE Maynard Rd, Cary, NC 27511
View Map

This Rare Disease Day Event is welcome to anyone looking to connect with other patients, learn more about rare diseases, or just have something fun/educational to do on a Saturday! This is a family-friendly event with plenty of food, drinks, games, and speakers. Learn more…

 

Upcoming Event: Davidson Football Bowling Event

Davidson Football Bowling Event Flyer

 

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…