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 CureTheProcess Campaign, Rare Disease Workshop Series, 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.

Our Team

Dr. Emil Kakkis - President and Founder

Emil D. Kakkis MD, PhD  [bio]
President and Founder

Julia Jenkins - Director of Public and Government Relations

Julia Jenkins
Executive Director

Carol Kennedy

Carol Kennedy
Chief Development Officer

Max G. Bronstein
Senior Director, Advocacy & Science Policy

Stephanie Fischer
Stephanie Fischer
Senior Director, Patient Engagement and Communications

Sue Colton - Foundation and Operations Manager

Sue Colton
Director of Grants & Special Events

Grant Kerber

Grant Kerber
Deputy Director of Communications & Patient Programs

Sarah Millus
Office and Development Manger

Phil Hays - Controller

Deborah Walter
Manager of Finance & Human Resources

Julie Jehly

Julie Jehly
Program Director, Italian Street Painting Marin

Crystal Sullivan
Crystal Sullivan
Operations Director, Italian Street Painting Marin

Vignesh Ganapathy, J.D.
Associate Director of Advocacy and Government Relations

Lisa Schill
RDLA Special Events Program Coordinator





Board of Directors
  • President & Founder Emil D. Kakkis, MD, PhD, President/CEO, Ultragenyx
  • Secretary Julia Jenkins, Executive Director, EveryLife Foundation
  • Treasurer John Klock, MD, CEO & Managing Director, QT Ultrasound, LLC
  • Ritu Baral, Managing Director/Senior Biotechnology Analyst, Cowen & Company
  • Mark Dant, Executive Director, National MPS Society
  • David Rowitch, MD, PhD, Chief of Neonatology, University of CA, SF
  • Jenny Soriano, MD, OB/GYN, Kaiser Permanente
  • Matt Wilsey, President, Grace Wilsey Foundation