The EveryLife Foundation for Rare Diseases is 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

Sue Colton - Foundation and Operations Manager

Sue Colton
Associate Director of Operations and Development

Andy Russell - Associate Director of Advocacy and Government Relations

Andy Russell
Associate Director of Advocacy and Government Relations

Manager of Communications and Alliance Development

Grant Kerber
Manager of Communications and Alliance Development

Sara Kowalczyk
Senior Director of Regulatory Policy

Phil Hays - Controller

Deborah Walter
Manager of Finance & Human Resources




Our Board of Directors

Emil D. Kakkis M.D., Ph.D., President and Founder
President/CEO, Ultragenyx Pharmaceuticals

Jenny Soriano, M.D.
OB/GYN, Kaiser Permanente

John Klock
Managing Director, CVUS Clinical Trials LLC

Mark Dant
Executive Director, The Ryan Foundation for MPS Children

David Rowitch, M.D., Ph.D.
Chief of Neonatology, UCSF

Ritu Baral
Managing Director & Senior Analyst, CANACCORD Genuity

Julia Jenkins, Treasurer/Secretary 
Executive Director, EveryLife Foundation for Rare Diseases