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N.C. Council on Rare Diseases Spotlighted in Washington D.C.

April 12, 2016

 Submitted by Taylor’s Tale North Carolina’s Leadership Enhances National Rare Disease Initiatives When Governor McCrory signed the legislation enacting the North Carolina Advisory Council on Rare Diseases on August 5, 2015, the state claimed a leadership role by creating the first such council in the country. By passing the legislation unanimously, the General Assembly … Read more

Sen. Burr Fights for Americans Suffering from Rare Diseases

April 8, 2016

 Contact: Taylor Holgate (Burr) 202-228-1616 Wednesday April 6, 2016 WASHINGTON – Today, Senator Burr (R-NC) spoke before the Health, Education, Labor and Pensions (HELP) Committee on the need for rare disease treatments. WATCH: Sen. Burr speaks on treatments for rare diseases Senator Burr highlighted the example of Taylor King from Charlotte, NC who suffers … Read more

RareCast Interview: North Carolina Seeks Leadership Role in Combating Rare Diseases

December 9, 2015

Sharon King Daniel S. Levine, producer of RARECast on Global Genes RARE Daily, interviews Sharon King, rare disease advocate and president of Taylor’s Tale, and Tara Britt, associate director of the newly created North Carolina Rare Disease Advisory Council, about the development of the legislation that created the advisory council on rare diseases in North … Read more

CBS News: A Mother’s Quest to Find Cure for Rare Genetic Defect

October 19, 2015

On October 16, 2015, CBS Evening News aired a story on Lori Sames’ search for a cure for her daughter, Hannah, who suffers from Giant Axonal Neuropathy disease (GAN), a rare disease which causes nerves to die and muscles to stop working. Lori and her husband, Matt, founded Hannah’s Hopeto raise money to fund the … Read more