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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.

09/10/2026

WE'VE MOVED! Come check us out at RARE Foundation!

09/08/2026

The EveryLife Foundation for Rare Diseases is now the RARE Foundation! And while our look has changed, our mission grows stronger. The RARE Foundation is a community of relentless advocates driving public policy to improve the quality of life for all people living with rare diseases. With robust, science-based evidence, we redefine what’s possible—accelerating equitable treatments and diagnosis.

For more than 16 years, we’ve been a leader in the rare disease community, and our new identity strengthens that commitment. We’re excited to begin this new chapter together and continue redefining what’s possible for rare disease. Learn more and explore our new website, updated programs, and find ways to get involved at rareadvocates.org.

09/01/2026

Today is the first day of Newborn Screening Awareness Month!

We are excited to kick off the month with words of wisdom from an expert in the newborn screening space. Dorothea C. Lantz, Director of Community Engagement at Prader-Willi Syndrome Association | USA, Founder & CEO of Florida Rare, and Chair of the Community Advisory Board for Florida Sunshine Genetics, shares what newborn screening means to her.

Join Dorothea and other experts at this year’s Newborn Screening Bootcamp in Washington, D.C. Visit our page to learn more and register! https://everylifefoundation.org/newborn-screening-take-action/newborn-screening-bootcamp/

Have questions about newborn screening? Comment below, and our staff will answer them later this month!

Keep an eye out for more resources, updates, and expert insights throughout Newborn Screening Awareness Month.

08/27/2026

Illinois has become the 15th RUSP-aligned state!

Illinois has passed SB 3049, which updates its newborn screening laws to require timely review and implementation of new screening conditions, establishes clear procedures and funding for expanded testing and follow-up, and enhances oversight through an advisory committee and annual reporting. The advisory committee, now called the Universal Newborn Screening Advisory Committee, reviews all new conditions added to the federal Recommended Uniform Screening Panel (RUSP) within 12 months of their addition. The law ensures that review and recommendation of conditions are not limited to the federal panel and allows for consideration of additional disorders.

Learn more about the bill: https://legiscan.com/IL/bill/SB3049/2025

The EveryLife Foundation thanks Illinois Senator Julie Morrison and Representative Martha Deuter for spearheading this legislation and ensuring that families in Illinois have access to newborn screening in this changing landscape.

With Illinois' addition, 67% of babies are now born in RUSP-aligned states! As Newborn Screening Awareness Month begins next week, we encourage state legislators to consider adopting similar legislation. Visit our website to learn more: https://everylifefoundation.org/newborn-screening-take-action/state-rusp-alignment-map/

08/27/2026

One week left to register for the in-person Newborn Screening Bootcamp!

Co-hosted by the EveryLife Foundation for Rare Diseases and Expecting Health, Newborn Screening Bootcamp provides attendees with the opportunity to learn about and discuss developments in newborn screening with experts and patient advocates currently navigating the newborn screening process – as we also work to facilitate engagement across our ecosystems.

Panels will focus on ways advocates interact with the newborn screening system, highlighting the work of federal agencies as well as opportunities for advocates to sit on various federal and state newborn screening-related committees.

📆 When? September 24, 10 a.m.- 4 p.m. ET
📍 Where?
1500 K St NW #1100
Washington, DC 20005

Register here: https://everylifefoundation.org/newborn-screening-take-action/newborn-screening-bootcamp/

08/26/2026

Join the EveryLife Foundation team!

Our friendly and passionate team works every day to improve the lives of the more than 30 million Americans suffering from one or more of the over 10,000 known rare diseases.

We do this by educating and activating the patient community to ensure they are heard by policy makers in government and the healthcare industry.

We are currently hiring a POLICY INTERN.

If you or someone you know is interested? Please visit our careers page: https://everylifefoundation.org/careers/

08/25/2026

What questions do you have about newborn screening?

As August comes to an end, the EveryLife Foundation is gearing up for Newborn Screening Awareness Month! This September, we’ll be sharing a series of educational resources and updates on the newborn screening (NBS) policy space.

Have a question about ? Share it in the comments and help shape the information we provide to the rare disease community.

We look forward to answering your questions throughout September. Stay tuned for more interactive opportunities to learn!

08/19/2026

Reminder to register for the 2026 Newborn Screening Bootcamp! Co-hosted by the EveryLife Foundation for Rare Diseases and Expecting Health (TAG), the Newborn Screening Bootcamp provides attendees with the opportunity to learn about and discuss developments in newborn screening with experts and patient advocates currently navigating the newborn screening process.

📍Location:
Faegre Drinker
1500 K St NW #1100
Washington, DC 20005

⏰ When:
September 24, 2026
10:00 a.m.–4:00 p.m. ET
Reception: 4:00 p.m.–5:00 p.m. ET

Spots are filling up! If you are interested in learning more about newborn screening, register for the bootcamp now: https://hubs.li/Q04tBvFJ0

08/13/2026

‼️𝗧𝗼𝗱𝗮𝘆, 𝘁𝗵𝗲 𝗙𝗗𝗔 𝗵𝗮𝘀 𝗿𝗲𝗹𝗲𝗮𝘀𝗲𝗱 𝗶𝘁𝘀 𝗱𝗿𝗮𝗳𝘁 𝗴𝗼𝗮𝗹𝘀 𝗹𝗲𝘁𝘁𝗲𝗿 𝗳𝗼𝗿 𝘁𝗵𝗲 𝗣𝗿𝗲𝘀𝗰𝗿𝗶𝗽𝘁𝗶𝗼𝗻 𝗗𝗿𝘂𝗴 𝗨𝘀𝗲𝗿 𝗙𝗲𝗲 𝗔𝗰𝘁 𝗿𝗲𝗮𝘂𝘁𝗵𝗼𝗿𝗶𝘇𝗮𝘁𝗶𝗼𝗻 𝗳𝗼𝗿 𝗙𝗬𝟮𝟬𝟮𝟴–𝟮𝟬𝟯𝟮 (𝗣𝗗𝗨𝗙𝗔 𝗩𝗜𝗜𝗜)

The Prescription Drug User Fee Act (PDUFA) was initially passed by Congress in 1992 in an effort to provide supplementary resources to the FDA to address bottlenecks in regulatory review and ensure review timelines and regulatory processes reflected the urgency of the patient community.

Every five years, a new review cycle occurs in which ‘user fees’ and commitments from the agency are renegotiated by the FDA and the regulated industries, with opportunities for input from public stakeholders.

Over the past 18 months, the EveryLife Foundation has convened an Ad-Hoc Working Group of Community Congress coalition members to understand rare disease community priorities for PDUFA VIII.

We've brought those priorities to the FDA in stakeholder consultation meetings to ensure rare patient and caregiver perspectives were a central part of considerations.

🔗 To better understand PDUFA VIII and to read more about the draft goals letter and next steps, see our website: https://everylifefoundation.org/breaking-news-the-fda-has-released-the-draft-goals-letter-for-pdufa-viii/

Our policy team is reviewing the full letter and will share insights and opportunities for engagement as they become available.

Stay connected and engaged! This will be an exciting couple of months of momentum and progress!

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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