The EveryLife Foundation for Rare Diseases announces the retirement of Dr. Emil Kakkis. As a physician, a scientist, and an advocate, Dr. Kakkis founded EveryLife in 2009 to improve the regulatory and development process for rare diseases. Since its inception, Dr. Kakkis has served on the Foundation’s Board of Directors and played a leading role in establishing EveryLife as a nationally and internationally impactful voice in rare diseases. In 2019, Dr. Kakkis was presented with the EveryLife Foundation Rare Disease Legislative Advocate (RDLA) RareVoice Lifetime Achievement Award for dedicating his life to the development of novel, life-saving drug treatments for rare diseases and his advocacy for science-based policy and regulatory changes. The Foundation wishes to express its sincerest gratitude to Dr. Kakkis for his dedicated service to the Board and his historic contributions to the rare disease community.
“It has been a privilege and an honor to found and support the EveryLife Foundation. As a scientist and clinician, I saw the opportunities arising from groundbreaking basic and clinical research, but a gap in our ability to rapidly translate the science to the clinic. I started the EveryLife Foundation with the vision of taking a science-driven approach to change the paradigm. Looking back on almost 15 years of work, I feel very proud of the extraordinary impact that the Foundation has had on rare disease patients.” said Dr. Kakkis. Frank Sasinowski, Chairperson of the Board of Directors at the EveryLife Foundation, said: “Speaking on behalf of everyone at the EveryLife Foundation, we could not be more grateful to Dr. Kakkis for his vision and leadership in establishing the Foundation, his invaluable service as a Board director to build the Foundation into a sustainable organization, and his continued dedication in multiple forums to advocate with passion for the Rare Disease community.”
Since its inception, the Foundation has remained committed to ensuring that each patient has a voice to shape regulatory science and policies that speed development, approval, and access to novel drugs and diagnostics for rare diseases. By focusing on bringing a science-driven, policy-focused approach to championing advancements for the rare disease community, the Foundation is proud to have supported advances such as the establishment of the Congressional Rare Disease Caucus, RUSP Alignment Legislation which has passed in 10 states, critical provisions of the 21st Century Cures Act, the National Economic Burden of Rare Disease Study, the Rare Artist Contest, and the Rare Disease Scientific Workshop. for the rare diseases community. The EveryLife Foundation is proud to lead the Community Congress, the Rare Hub in Washington, DC, the annual Rare Disease Week on Capitol Hill, and Rare Across America, events that continue to inspire and advance the rare disease community every day.
“I do not know how we can ever fully measure the impact that Emil has on the global rare disease community through his establishment of – and contributions to – our Foundation.”, shared Julia Jenkins, Executive Director for the EveryLife Foundation. “But I do know that – each and every week – I meet families whose children are alive as a result of Emil’s passion, expertise, philanthropy, and activism. He has changed the rare disease landscape.”
The Foundation will still work with Dr. Kakkis to bring Rare Artists, patients, and their families to Patient Day at Ultragenyx. The annual event held in the fall brings families together for fun activities, games, live music, inspiring speeches, and showcases the amazing art from our annual RareArtist contest.
