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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.

10/01/2025

⁉️ 𝗪𝗵𝗮𝘁 𝗱𝗼𝗲𝘀 𝘁𝗵𝗲 𝗙𝗲𝗱𝗲𝗿𝗮𝗹 𝗚𝗼𝘃𝗲𝗿𝗻𝗺𝗲𝗻𝘁 𝗦𝗵𝘂𝘁𝗱𝗼𝘄𝗻 𝗺𝗲𝗮𝗻 𝗳𝗼𝗿 𝘁𝗵𝗲 𝗿𝗮𝗿𝗲 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆?

In anticipation of the shutdown, the U.S. Department of Health and Human Services released a contingency plan for each of its agencies outlining how it will operate in the event of a shutdown.

To learn more about how each agency (U.S. Food and Drug Administration, CDC, Medicare, Medicaid, etc.) will be impacted and what the shutdown means for the rare disease community, click the following link: https://hubs.li/Q03LJsnk0

09/29/2025

Keep Rare Momentum Moving Forward

In the last two months, the rare disease community has proven what relentless advocacy can accomplish:
✅ Through Rare Across America, 500 advocates met with lawmakers nationwide to make rare voices heard.
✅ The EveryLife Foundation recently held a first-of-its-kind event: the Newborn Screening Evidence Review Workshop. This workshop filled a critical gap caused by the disruption of the Advisory Committee on Heritable Disorders in Newborns and Children for Duchenne muscular dystrophy (Duchenne) and Metachromatic Leukodystrophy (MLD).
✅ The Give Kids a Chance Act, which reauthorizes the rare pediatric disease Priority Review Voucher (PRV) program, was unanimously advanced through the House Committee on Energy and Commerce on September 17, bringing us one step closer to reauthorizing the PRV program.
✅ We made significant strides in the Newborn Screening Saves Lives Act, and so much more!

Let’s keep pushing forward — because every life deserves timely diagnosis, access to treatment, and hope for the future. Make a gift today to continue our momentum! ➡️ https://lnkd.in/ddnp_R36

09/25/2025

Ready to share your story and take part in rare disease advocacy? Join the EveryLife Foundation for our new virtual session, “How to Get Involved,” on Thursday, October 9 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://everylifefoundation.org/intro/

📰 Want to start connecting now? Sign up for our newsletter so you never miss an opportunity: https://everylifefoundation.org/newsletter-signup/

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

*Dates are subject to change. December’s session will be held on Monday, December 9.

📅 Dates:
Thursday, October 9, 2025
Monday, December 8, 2025
Thursday, February 12, 2026
Thursday, April 9, 2026
Thursday, June 11, 2026
Thursday, August 13, 2026
Thursday, October 8, 2026
Thursday, December 10, 2026

09/23/2025

The EveryLife Foundation is hiring for the position of Vice President of Patient Community Engagement to help advance our mission of leading innovation in rare disease policy and advocacy. We are seeking a bold, empathetic, and strategic leader to own and drive our Patient Community Engagement program. This role is pivotal in shaping how rare disease communities engage within the healthcare ecosystem, regulatory environment, and policy space.

Some key responsibilities include:

👥 Co-create and implement a bold strategy for patient engagement
🗣️ Develop and lead initiatives that elevate patient voices
🌟 Represent the Foundation and patient engagement program at events

If you’re interested in this position, please apply here: https://hubs.ly/Q03KCbkV0

09/17/2025

🎙 The House Committee on Energy and Commerce voted to advance the Give Kids a Chance Act, which would reauthorize the Rare Pediatric Disease PRV Program for 5 years! This markup signifies essential progress for the rare disease community, but more action is needed to restore and reauthorize the PRV Program.

As the Chairman of the Energy and Commerce Committee, Representative Brett Guthrie stated: "This program provides a critical incentive for companies to develop treatments and cures." We are grateful for the strong commitment to advancing solutions for rare pediatric diseases that the Committee members demonstrated in their statements today.

‼️The EveryLife Foundation urges Congress to pass the bill and reauthorize the Rare Pediatric PRV program without delay. You can still make a difference! Support the reauthorization of the PRV program here: https://everylifefoundation.quorum.us/campaign/110385/

09/15/2025

Today we kicked off our new Scholarship Mentor Program with our first mentor training.

The Mentor Program pairs repeat scholarship recipients, serving as mentors, with new awardees to provide guidance, encouragement, and peer support as they navigate school and life with a rare disease.

In addition to these one-on-one connections, the program will also host sessions throughout the year on topics identified by students, such as career-building skills, advocating for accessibility and accommodations in school, and navigating insurance transitions from pediatric to adult care.

09/15/2025

Happening this week! It's not too late to register for our upcoming virtual Newborn Screening Bootcamp on September 17 at 12 PM ET in collaboration with Expecting Health.

This event provides an opportunity to learn about the latest developments in newborn screening from experts, patient advocates, and federal leaders.

Register Now! https://hubs.li/Q03JlB-B0

09/11/2025

📢 The EveryLife Foundation for Rare Diseases is honored to co-lead a large coalition of patient advocacy organizations in urging Congress to pass the Give Kids a Chance Act. Now is the time to renew the Rare Pediatric Disease Priority Review Voucher Program. Congress can and help find through this simple, market-based incentive that comes at no cost to taxpayers.

"The Rare Pediatric Disease PRV program’s authorization expired on December 20, 2024... Allowing this program to lapse not only eliminates a proven pathway for future innovation and hope, but it also creates uncertainty for scientific work currently underway that will not meet the September 30, 2026 deadline."

To read the full letter here 👉 https://lnkd.in/gPfKggBM

09/10/2025

Louisiana rare disease patient advocate Jakeel Abdullah knows the Priority Review Voucher Program isn’t about just one disease - it’s about giving ALL rare pediatric patients a chance. The expired last year, leaving rare patients without a trajectory of treatment. Watch Jakeel's testimony about the importance of the PRV program.

Tell your members of Congress to pass the Give Kids a Chance Act (H.R. 1262/ S. 932) and .

Take Action: https://everylifefoundation.quorum.us/campaign/110385/

Together, we can make sure there are

09/04/2025

👶 Register for our Virtual Newborn Screening Bootcamp!

Co-hosted by EveryLife Foundation and Expecting Health, this event brings together experts, patient advocates, and federal leaders to discuss the latest developments in newborn screening.

💡 Learn how advocates shape the newborn screening process
🤝 Explore opportunities to serve on federal & state committees
📢 Hear from those navigating newborn screening firsthand

Don’t miss this chance to connect, learn, and make an impact! https://lnkd.in/gs7q4rqX

09/03/2025

‼️The House released the FY 26 Labor, HHS funding bill that started markup yesterday. The bill includes $48.7 billion for the NIH, and $928.3 million for NCATS, but proposes cuts to key public health agencies.

The Everylife Foundation for Rare Diseases, alongside others at United for Cures, sent a letter to Congress urging them to continue strong public investment in research for treatments and cures. The EveryLife Foundation is proud to stand with other leading healthcare organizations on behalf of the rare disease community to help ensure research funding is protected.

Read the letter here 👉 https://curetheprocess-my.sharepoint.com/:b:/g/personal/kwagman_everylifefoundation_org/EUmP_1d8hLdHspjZ8eyc3fsBVVxysu5fO_NrZ76g88T9WQ?e=S5AKNt

Read the full bill text 👉https://appropriations.house.gov/sites/evo-subsites/republicans-appropriations.house.gov/files/evo-media-document/fy26-labor-health-and-human-services-education-and-related-agencies-subcommittee-mark.pdf

Read a summary of the bill text 👉https://appropriations.house.gov/sites/evo-subsites/republicans-appropriations.house.gov/files/evo-media-document/fy26-labor-health-and-human-services-education-and-related-agencies-subcommittee-summary.pdf

09/02/2025

Congratulations to all Rare Artist Finalists!

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Washington D.C., DC

Opening Hours

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

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+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

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