Rare Disease Advocacy

Together with other dedicated advocates, Taylor’s Tale is uniting elected officials, healthcare providers, public health officials, researchers, biotech industry representatives and patient advocates. This important work is creating real, lasting progress in the development of breakthrough treatments and life-changing public policies for rare disease patients.

Rare disease by the numbers
  • More than 7,000 rare diseases
  • One in 10 Americans and 350 million people worldwide
  • About 50% are children

Rare disease state-level advocacy

Taylor’s Law

In 2015, Taylor’s Tale proposed legislation that established the nation’s first rare disease advisory council in North Carolina. The unanimous passage of North Carolina House Bill 823 created the North Carolina Advisory Council on Rare Disease, housed at the School of Medicine at the University of North Carolina at Chapel Hill.

In 2016, state lawmakers renamed the bill Taylor’s Law to honor Taylor King.

Taylor’s Tale President Sharon King is an appointed member of the council, which serves as advisors on research, diagnosis, treatment and education relating to rare diseases.

Taylor’s Law is positioned to help not only 1 million rare disease patients and their families living in North Carolina, but also the state’s economy and the development of breakthrough therapies for the future.

North Carolina Rare Disease Advisory Council members include:
  • A physician with experience researching, diagnosing or treating rare diseases
  • A medical researcher with rare disease research experience
  • A registered nurse or advanced practice registered nurse with experience treating rare diseases
  • One rare disease survivor
  • One rare disease foundation representative
  • One representative from each academic research institution in North Carolina that receives any grant funding for any rare disease research

North Carolina Rare Disease Coalition

Taylor’s Tale founded the North Carolina Rare Disease Coalition as a complement to the North Carolina Advisory Council on Rare Disease. This group of advocates and patient organizations, led by Taylor’s Tale President Sharon King, provides a place for the rare disease community to partner, share ideas and build progress. Together, members of the N.C. Rare Disease Coalition help ensure that rare disease is a public health priority.

Rare disease federal legislation

Taylor’s Tale has signed on to and advocated for every rare disease-driven piece of federal legislation in recent years including the 21st Century Cures Act. We attend meetings on Capitol Hill during the week of World Rare Disease Day and throughout the year to highlight the need for increased support and funding.