Corporate Partners

Dr. Steven Gray and Sharon King
Dr. Steven Gray and Sharon King

The mission of the North Carolina Rare Disease Network is to improve the lives of millions of people with devastating rare diseases, by creating a unique collaborative partnership between patients, providers, scientists, agencies, and industry. As a result of accelerating momentum in the rare disease space, UNC Medicine has created an opportunity to engage corporate interaction to create unique and mutually beneficial partnerships.

The Facts on Rare Disease

  • A disese is considered rare if it affects fewer than 200,000 in a particular disease group.
  • There are approximately 7,000 different rare diseases with new diseases being discovered each day.
  • 30 million people in the United States are living with rare disease, which equates to 1 in 10 Americans, or 10% of the population.
  • If all the people with rare diseases lived in one country, it would be the third most populated country in the world.
  • 80% are genetic and 50% are pediatric.
  • 30% of those children will not live to see their 5th birthday.
  • Global Genes

Addressing the Need

House Bill 823, An Act Establishing the Advisory Council on Rare Diseases within the School of Medicine at UNC Chapel Hill, was ratified by the General Assembly on the July 29, 2015.  The Governor signed this legislation on August 5, 2015.  The legislation received bi-partisan support and passed unanimously through the NC House and Senate. The law was later named “Taylor’s Law” after Taylor King who had Batten disease. The Council is housed in the UNC School of Medicine.

North Carolina has become a national leader in addressing the challenges of rare diseases. The Council often advises other states in regards to council creation and development.
North Carolina is home to many outstanding universities and healthcare systems. There are many clinicians, researchers, nurses and healthcare providers who specialize in rare diseases in NC. The Council is led by the Chair and Associate Chair, two clinicians, and has a dedicated researcher, nurse, patient survivor, and advocate.

The Council’s work connecting other rare disease groups within the state necessitated expansion of the mission. The North Carolina Rare Disease Network was established under the umbrella of the Council. The mission of this network is to improve the lives of millions of people with devastating rare diseases, by creating a unique collaborative partnership between patients, providers, scientists, agencies, and industry.

As a result of accelerating momentum in the rare disease space, UNC Medicine has created an opportunity to engage corporate interaction to create unique and mutually beneficial partnerships.


For more information, please contact:

Tara J. Britt
tjbritt@unc.edu
919-417-6130