The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases. Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans. The science exists for many of these diseases to be treated; however, treatments may never be developed because of roadblocks in the development process, such as a lack of investment and a challenging regulatory environment. The Foundation works with patient organizations, Industry, Academic Scientists, the Food and Drug Administration (FDA), and National Institutes of Health (NIH) to improve the clinical development process through our Rare Disease Workshop Series, Rare Disease Legislative Advocates (RDLA) events, and legislation.
The Foundation was the driving force behind the grassroots movement that ensured the ULTRA/FAST language, to improve access to the FDA’s Accelerated Approval pathway for rare diseases, was included into the FDASIA final bill, which was signed by the President in July of 2012. The Foundation is working with rare disease stakeholders, Congress and the FDA to ensure the timely implementation of the legislation.
While the Foundation remains mainly focused on regulatory issues, it also works to grow the rare disease community by spearheading programs that fulfill unmet need for patients and by supporting other organizations working to help empower the rare disease community.
Chief Development Officer
Max G. Bronstein
Senior Director of Advocacy and Science Policy
Senior Director of Patient Engagement and Communications
Director of Development
Deputy Director of Communications and Patient Programs
Vignesh Ganapathy, J.D.
Associate Director of Advocacy and Government Relations
Office and Development Manger
Manager, Finance and Human Resources
RDLA Special Events Program Coordinator
Executive Director, Italian Street Painting Marin
Program Director, Italian Street Painting Marin
Operations Director, Italian Street Painting Marin