Taylor’s Tale is a Rare Village Foundation Fund. Rare Village Foundation is a Texas 501(c)(3) nonprofit corporation (EIN 83-4699994). It exists to empower families in their work to pursue treatments and cures for rare childhood diseases through local community education, inspiring advocacy and critical research that leads to the development of treatments for children confronting rare genetic diseases.
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) gene therapy program to its pipeline. Taylor’s Tale catalyzed this project, led by Steven Gray, PhD at UNC Chapel Hill, and funded it 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.