Partners

Taysha Gene Therapies is singularly focused on discovering, developing and commercializing gene therapies for the treatment of monogenic diseases of the central nervous system (CNS), both in rare and large patient populations. In 2021, Taysha announced the addition of an AAV-based CLN1 disease (Batten disease) program to its pipeline. The gene therapy treatment, developed at UNC Chapel Hill by Steven Gray, PhD, is anticipated to enter clinical trials in late 2021. Taylor’s Tale catalyzed this project and funded Dr. Gray’s research along with The Saoirse Foundation, Hayden’s Batten Disease Foundation and the Batten Disease Support and Research Association (BDSRA).

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.