News

Features

  • Taylor's Tale was among the 125 representatives of patient advocacy organizations, biotech firms, research universities and healthcare providers who joined state officials to highlight the public health priorities of the rare disease community during North Carolina’s first Rare Disease Legislative Day.

  • Thanks to Senator Richard Burr (R - NC), who spoke before the Health, Education, Labor and Pensions (HELP) Committee on the need for rare disease treatments on April 6. Sen. Burr shared Taylor's story and the work of Taylor's Tale on behalf of one in 10 Americans fighting a rare disease.

  • Taylor’s Tale joined rare disease advocates across the country this summer to support passage of lifesaving legislation in California that would expand access to newborn screening for rare diseases.

News Coverage