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EveryLife Foundation for Rare Diseases

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EveryLife Foundation for Rare Diseases

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We are dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

02/12/2026

Why is Katie Barrett-Stevens running?

"Running has always been a way that I could connect my mind and body to be fully present in both. I started running when we lost my brother-in-law in a hiking accident – if he could no longer run, then I would. This activity has deep meaning as a mother who has worked to find the best treatments for her child and in turn became the first Executive Director of the leading patient advocacy organization for Telomere Biology Disorders. Running means I run for and beside those in the rare community. If they can’t run, then I will. To put it simply, I love it and it allows me to think about all that my life and career have asked of me and to show up in the best way possible for myself and those I love and serve."

To help Katie reach her goal, click here: https://fundraisers.nyrr.org/fundraisers/85a6b8c627920c26745e

To learn more about the rest of the EveryLife Foundation for Rare Diseases Run Team, click here: https://everylifefoundation.org/run/?utm_content=368558642&utm_medium=social&utm_source=linkedin&hss_channel=lcp-16143911

02/05/2026

Why is Donta running:

“I wanted to run the NYC Half with the EveryLife Foundation because their mission aligns deeply with my commitment to advocacy, equity, and community-driven impact. Rare disease patients and families too often navigate fragmented systems without adequate support or representation, and the EveryLife Foundation works tirelessly to change that by amplifying patient voices and advancing meaningful policy solutions. Running this race is my way of honoring the resilience of the rare disease community and helping ensure that lived experience is at the center of research, policy, and care. Every mile represents progress toward a future where no rare disease patient is left behind.”

To help Donta reach his goal, click here: https://hubs.li/Q0420hY-0

To learn more about the rest of the EveryLife Foundation for Rare Diseases Run Team, click here: https://hubs.li/Q0420gNp0

02/05/2026

Hiring Now!

The EveryLife Foundation for Rare Diseases is hiring for a Director of Events. We are looking for an experienced leader in event management, preferably in a non-profit, healthcare, or advocacy setting. The EveryLife Foundation hosts in-person, hybrid, and virtual events that empower rare disease advocates to make their voice heard with policymakers. The Director of Events is the bridge between complex policy work and the people it impacts.

Interested applicants can use the following link to learn more about the position and apply: https://hubs.li/Q041_Nxf0

02/03/2026

‼️Breaking News: Rare Pediatric Disease PRV Program Reauthorized by Congress!

After a two-year campaign to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program, the rare disease community’s relentless advocacy has paid off.

Congress has passed the Labor, HHS, and Related Agencies Appropriations bill, effectively reauthorizing the PRV Program for five years while also funding a number of other critical healthcare agencies.

We applaud the reauthorization of the PRV Program and renewed investments in critical health research and public health programs.

Thank you to the congressional champions who have partnered with our rare disease community to secure these advances. While significant work remains to enable all those living with rare diseases to thrive, today’s progress will accelerate innovation, expand access to life-changing therapies, and offer renewed hope to children and families whose futures once seemed beyond reach.

To learn more about the full healthcare package, please visit our website: https://everylifefoundation.org/congress-passes-five-year-reauthorization-of-rare-pediatric-disease-prv-program/

02/02/2026

Why is Kathleen running:

“I run because every day I work alongside children and families navigating rare neuromuscular conditions, and I see how much strength it takes to live with uncertainty. As a Neuromuscular Clinic Coordinator at Children’s National, I’ve had the privilege of supporting families through some of their most challenging moments — and those experiences stay with me.

Running with the EveryLife Foundation feels like a natural extension of the advocacy I care so deeply about. This race is my way of showing up for the rare disease community, helping raise awareness, and supporting efforts that bring families closer to answers, resources, and hope. Every mile is for the patients and families who inspire me every single day.”

To help Kathleen reach her goal, click here: https://hubs.li/Q041jGb40

To learn more about the rest of the EveryLife Foundation for Rare Diseases Run Team, click here: https://hubs.li/Q041jHgW0

01/30/2026

‼️Update: Senate Advances Healthcare Funding and Rare Disease Priorities

Today, the Senate passed an amended government funding package that includes five FY26 appropriations bills and a set of important healthcare policies. The legislation would increase NIH funding for rare disease research, reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program for five years, and make it easier for kids with rare diseases who have Medicaid to access care across state lines.

We are grateful to Senate leaders for advancing these time-sensitive policies and sustaining funding for key healthcare agencies through September 30, 2026, especially given the dynamic legislative landscape. Because the Senate made changes to the legislation the House passed, the process is not yet complete.

➡️ What’s next: The House is expected to consider the amended package when it returns to Washington on Monday. If approved, the bill would move to the President’s desk for signature. In the meantime, a partial government shutdown is set to begin January 31 and will continue until final legislation is enacted.

We will continue to monitor developments and share updates on potential impacts to the rare disease community.

01/29/2026

Ready to share your story and take part in rare disease advocacy? Join the EveryLife Foundation for Rare Diseases for a virtual session, “How to Get Involved,” on Thursday, February 12 at 6 PM ET. You’ll hear about our programs, events, and the many ways to engage in advocacy through the Foundation. Register now at: https://hubs.li/Q040VdMn0

Can’t attend in February? These sessions will be offered every other month on the second Thursday at 6 PM ET.

Want to start connecting now? Sign up for our newsletter so you never miss an opportunity: https://hubs.li/Q040Vjb50

01/28/2026

Why is Julie running:

“I’m running on behalf of the EveryLife Foundation because rare disease advocacy lives at the intersection of my personal life and my professional calling. As a Neonatal Nurse Practitioner, I’ve spent years caring for babies and families facing rare and complex diagnoses, and I’ve seen how critical awareness, research, and policy support truly are. That understanding became even more personal when my grandson was diagnosed with a rare condition. Running this race is my way of helping keep rare diseases visible, supporting families who often feel overlooked, and contributing to a future where research and advocacy continue to move forward.”

To help Julie reach her goal, click here: https://hubs.li/Q040N6980

To learn more about the rest of the EveryLife Foundation for Rare Diseases Run Team, click here: https://hubs.li/Q040N5LY0

01/27/2026

Why is Heli is running:

“As a proud parent of two daughters who spent time in the NICU, I know firsthand the importance of specialized care, early screening, and comprehensive support for families. This is just one of the reasons why I am running the United Airlines NYC Half as a part of Team EveryLife! The EveryLife Foundation transforms science into action— advancing research, policy, and access to care. Join me in turning every mile into measurable impact.”

To help Heli reach her goal, click here: https://hubs.ly/Q040vzB90

To learn more about the rest of the EveryLife Foundation for Rare Diseases Run Team, click here: https://hubs.ly/Q040vzwF0

01/23/2026

We’re proud to introduce the six incredible advocates running on behalf of the EveryLife Foundation for Rare Diseases in the 2026 United Airlines NYC Half.

Each runner brings a personal “why,” a shared sense of purpose, and a commitment to advancing equity and access for the 30 million Americans living with rare diseases. Each mile they run represents more than a race; they represent advocacy in action.

Follow along as we kick off the Meet the 2026 NYC Half Runners series and celebrate the stories behind the miles leading up to race day on March 15.

Learn more about the runners and the marathon here: https://hubs.li/Q0403_mv0

01/23/2026

🆕 Introducing the Newborn Screening Resource Roadmap.

❓ Is the condition present in early childhood? Is it currently screened for by any U.S. state?

These questions and more can help you better understand the evidence development behind newborn screening and what is needed to add conditions to state panels.

For more than 50 years, every newborn in the U.S. has been screened for a range of debilitating and deadly diseases through a simple heel prick. Each year, 12,000 babies and their families benefit from early detection and life saving treatments made possible by newborn screening.

The Newborn Screening Resource Roadmap is designed to help anyone new to newborn screening navigate key topics and resources so that you can advocate effectively for newborn screening in your state.

🔗 Learn more and check out our new Roadmap here: https://everylifefoundation.org/newborn-screening-take-action/newborn-screening-resource-roadmap/

01/22/2026

Great news!

We are excited to announce that the healthcare funding package passed the House today with bipartisan support, setting up a Senate vote on the legislation next week. The bill includes rare disease community priorities, such as the reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program and increased funding for the National Institutes of Health, which will bring much-needed stability to the rare disease therapy development ecosystem.

We are calling on the Senate to swiftly pass the vital healthcare funding package, ensuring that lifesaving research and programs for our community continue to drive innovation and improve the health of the over 30 million Americans living with rare diseases. Join us in urging your Senators to support the funding package and reauthorize the PRV Program ➡️ https://everylifefoundation.quorum.us/campaign/110385/

If the Senate does not pass the legislation next week, there will be a partial government shutdown, including the pause of services in the Department of Health and Human Services. To learn more about what this could mean, please see our shutdown guide from October ➡️ https://everylifefoundation.org/understanding-the-federal-government-shutdown/

Address

Washington D.C., DC

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+12026977273

Website

http://www.EveryLifeFoundation.org/

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Because Every Life Matters

The EveryLife Foundation for Rare Diseases was founded by Dr. Emil Kakkis in 2009. Kakkis, a reknowed geneticist, has dedicated his life to the development of novel drug treatments for rare diseases. These treatments have saved the lives of thousands of children, children like Ryan Dant. In 1991, doctors told Ryan’s parents that he would not live to see adolescence due to a rare disease called mucopolysaccaridosis 1 (MPS1), which had no known treatment. The Dants were determined to change that. Starting with a bake sale netting $342, they raised over $3 million to further research for MPS. The funds proved critical to Dr. Kakkis in the development of Aldurazyme.

When a biotech startup took a risk on the new therapy, a clinical trial was approved. In 1998, Ryan became one of the first patients. The response was dramatic. Ryan regained motion in his joints and the swelling in his liver spleen subsided. Ryan went on to graduate from the University of Louisville. Despite positive results, the FDA required a second trial, adding years and millions of dollars in funding before Aldurazyme was approved in 2003. In 2009, Dr. Kakkis started the EveryLife Foundation for Rare Diseases to drive legislative and policy change and bring needed treatments to rare disease patients. In 2017, Mark Dant became chairman of the EveryLife Foundation Board and continues to advance this critical mission.

EveryLife Foundation for Rare Diseases

02/12/2026

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01/30/2026

01/29/2026

01/28/2026

01/27/2026

01/23/2026

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01/22/2026

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