About Us
The Save Rare Treatments Task Force represents a diverse group of organizations with the aim of elevating critical rare disease issues and promoting policies to support rare disease patients and their families.
The Save Rare Treatment Task Force
Work with Congress and the Administration to ensure that the Orphan Drug Exclusion from eligibility for negotiation under the Medicare Drug Price Negotiation Program allows products to remain excluded so long as their FDA approved uses are exclusively for rare diseases.
Restore the spirit of the research and development incentives in the Orphan Drug Act that have succeeded for more than 40 years so more persons living with rare diseases can have treatment options.
The Task Force is a growing, multi-sector public policy and advocacy collaboration of organizations representing people living with rare diseases, biopharmaceutical innovators, and other health care stakeholders.
Our Members
Arya Singh, MPH/BA
Public Health Researcher & Rare Disease Advocate
