Partners

Abeona Therapeutics Inc., a clinical-stage biopharmaceutical company focused on developing therapies for life-threatening rare genetic diseases, announced the addition of an AAV-based infantile Batten disease program to its pipeline in September 2016. The gene therapy treatment, developed at the University of North Carolina at Chapel Hill by Steven Gray, PhD, is anticipated to enter clinical trials in 2017. Taylor’s Tale, The Saoirse Foundation, Hayden’s Batten Disease Foundation and the Batten Disease Support and Research Association (BDSRA) made Dr. Gray’s work possible.

Taylor’s Tale is a member of the Global Genes RARE Foundation Alliance ™, a coalition of more than 300 rare disease organizations. These partners exchange best practices and share lessons learned to drive better outcomes for the entire rare disease community.

The EveryLife Foundation for Rare Diseases is a 501(c)(3) non-profit organization dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy.

Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government.