Press Releases

  • Abeona Therapeutics Inc., a clinical-stage biopharmaceutical company focused on developing therapies for life-threatening rare genetic diseases, announced today the addition of an AAV-based infantile Batten disease (CLN1) program to its Batten pipeline.

  • Following a unanimous vote by the N.C. General Assembly, N.C. Governor Pat McCrory signed Taylor’s Law, which renames the legislation that created the N.C. Advisory Council on Rare Diseases in honor of Taylor King.

  • Sharon King, president of Taylor’s Tale, delivered a keynote address during North Carolina’s first Rare Disease Legislative Day on June 7.

  • 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.