RARE Foundation

RARE Foundation We are a community of relentless advocates who drive 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. The RARE Foundation (formerly the EveryLife Foundation for Rare Diseases) is a community of relentless advocates, who drive public policy to improve the quality of life for all people living with rare diseases.

What changed in the FDA’s updated substantial evidence guidance, and what could it mean for rare disease therapy develop...
09/29/2026

What changed in the FDA’s updated substantial evidence guidance, and what could it mean for rare disease therapy development?

The FDA recently updated an important guidance document commonly referred to as the “substantial evidence guidance.”

In our latest blog, we explore the background of the substantial evidence standard, why it matters for rare disease therapy development, and what the RARE Foundation recommended in our comments to the FDA on the draft updates.

Read blog post here: https://www.rareadvocates.org/news/the-updated-substantial-evidence-guidance/

🏅 Advocates, you are invited to participate in Team RARE 26.2, a virtual endurance opportunity with one rule: Do It Your...
09/28/2026

🏅 Advocates, you are invited to participate in Team RARE 26.2, a virtual endurance opportunity with one rule: Do It Your Way!

From October 12 through November 13, run, walk, bike, roll, hike, dance, or combine activities as you complete 26.2 miles on your own or with family, friends, coworkers, or your community.

Proudly supported by Rocket Pharmaceuticals, Team RARE 26.2 is built around connection, inclusion, and shared purpose in support of individuals and families impacted by rare diseases.

🏅 Every registered participant who completes Team RARE 26.2 will receive a Team RARE medal. Participation is free, and fundraising is optional but highly encouraged!

👟 Together, Every Mile Counts.

Register and learn more here: https://www.rareadvocates.org/events/team-rare-26-2/

What’s behind our new name and logo? 💎RARE stands for Relentless Advocates. Robust Evidence. It reflects what has always...
09/26/2026

What’s behind our new name and logo? 💎

RARE stands for Relentless Advocates. Robust Evidence. It reflects what has always powered our work: bringing together the voices of the rare disease community to drive meaningful change.

Our new diamond-shaped logo tells that same story. Its interconnected shapes represent strength, unity, and collaboration, reminding us that when we bring our distinct voices together, we create something stronger than any one of us could achieve alone.

New look. Same commitment. Together, we’re Redefining Rare Disease.

This week we were thrilled to cohost the 8th Annual Newborn Screening Bootcamp with Expecting Health. Over 140 attendees...
09/25/2026

This week we were thrilled to cohost the 8th Annual Newborn Screening Bootcamp with Expecting Health. Over 140 attendees from across the newborn screening ecosystem joined us in Washington, DC and online to discuss the how partnerships are driving the evolution of newborn screening in the U.S.

Our speakers and panelists shared practical advice for how to advance the evidence, infrastructure, and policy needed to ensure newborn screening remains one of the most successful public health programs in the U.S.

Thank you to all of our speakers, as well as our sponsors: Sanofi, Merck, BioMarin, Takeda, Travere Therapeutics, Sarepta Therapeutics, REGENXBIO, Ultragenyx, Catalyst Pharmaceuticals Ambry Genetics, Astellas, Entrada Therapeutics, Lilly, Minoryx Therapeutics, and Orchard Therapeutics.

The best advocacy happens when our rare disease community can be in the same room and exchange ideas, challenge assumptions, and learn from one another.

Did you miss the event? Stay tuned for a recap next week and recordings of panels will be available in the coming weeks. Don’t forget to check out our newborn screening resources on our website in the meantime: https://www.rareadvocates.org/issues/newborn-screening/

Starting NOW! The 2026 Newborn Screening Bootcamp is happening today, and there’s still time to join virtually! Hear fr...
09/24/2026

Starting NOW!

The 2026 Newborn Screening Bootcamp is happening today, and there’s still time to join virtually! Hear from experts and patient advocates as they discuss the latest developments in newborn screening and share their experiences navigating the process.

To register visit ➡️ https://www.rareadvocates.org/newborn-screening-bootcamp/

We're excited to continue recognizing Newborn Screening Awareness Month with our rare disease community! The 2026 Newb...
09/23/2026

We're excited to continue recognizing Newborn Screening Awareness Month with our rare disease community!

The 2026 Newborn Screening Bootcamp is tomorrow, and there’s still time to register virtually! Join us on September 24 to hear from experts and patient advocates as they discuss the latest developments in newborn screening and share their experiences navigating the process. To register visit ➡️ Newborn Screening Bootcamp

Ahead of tomorrow's bootcamp, check out the resources below to learn more about newborn screening and the work being done to advance it!

Newborn Screening 101 Video ➡️ https://lnkd.in/gDKD2kfu
Newborn Screening Resource Roadmap ➡️ https://lnkd.in/gfgzJJUG
Newborn Screening Timeline ➡️ https://lnkd.in/ggQnfccb
Newborn Screening State RUSP-alignment Map ➡️ https://lnkd.in/gzZVhRrg

Stay tuned for more recaps, resources, advocate testimonies, and insights from community experts such as Matthew Ellinwood as we continue recognizing Newborn Screening Awareness Month!

Join RARE Pride on Monday, September 28 at 6PM ET for the session, "Art at the Intersection: A conversation and interact...
09/23/2026

Join RARE Pride on Monday, September 28 at 6PM ET for the session, "Art at the Intersection: A conversation and interactive activity with LGBTQIA+ RARE Artists Grijs DeKruif and Adare."

Please come prepared with art or craft supplies of your choice (digital or physical) to work on while our guest advocates share their journey with art at the intersection of their rare disease and LGBTQIA+ identities.
Register at the link below for this interactive session and discussion on incorporating art into your RARE Pride advocacy.

👉 To register click here: https://us02web.zoom.us/meeting/register/s58xDmh3Qemxn8tUuAJUGA #/registration

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RARE Disease Week 2027 Travel Reimbursement Applications Are Now Open!Join us March 2–4, 2027, in Washington, DC, as adv...
09/22/2026

RARE Disease Week 2027 Travel Reimbursement Applications Are Now Open!

Join us March 2–4, 2027, in Washington, DC, as advocates from across the country come together to share their stories and make their voices heard by Members of Congress. Whether you’re new to advocacy or a seasoned advocate, all are welcome!

To help make participation possible, the RARE Foundation is offering a limited number of travel reimbursements for individuals and caregivers attending RARE Disease Week.

Application deadline: Friday, November 6, 2026.
Learn more and apply here: https://bit.ly/4jo7fku

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👉 RARE Community Grants (formerly Rare Giving) provides financial support to 501(c)(3) rare disease organizations workin...
09/18/2026

👉 RARE Community Grants (formerly Rare Giving) provides financial support to 501(c)(3) rare disease organizations working to advance advocacy and public policy efforts.

Funding can support resources and events such as advocacy training, policy-focused conferences, translation services, survey tools, and patient experience data collection.
Organizations in the U.S. and internationally are eligible to apply.

Applications close on Friday, September 25, visit our page to learn more and apply: https://www.rareadvocates.org/programs/rare-community-grants/

Our new website has all of our existing tools and even more! In honor of Newborn Screening Awareness Month, here are fou...
09/17/2026

Our new website has all of our existing tools and even more! In honor of Newborn Screening Awareness Month, here are four resources you’ll want to check out:

Newborn Screening 101 Video ➡️ https://www.rareadvocates.org/resources/newborn-screening-101/

Newborn Screening Resource Roadmap ➡️ https://www.rareadvocates.org/newborn-screening-resource-roadmap/

Newborn Screening Timeline ➡️ https://www.rareadvocates.org/newborn-screening-progress/

Newborn Screening State RUSP-alignment Map ➡️ https://www.rareadvocates.org/newborn-screening-alignment-by-state/

We’re excited to continue engaging with you throughout the month with more recaps, resources, and advocate testimonies. Hear about the importance of newborn screening from one of our community experts: Niki Armstrong, MS, CGC, VP, Genetic Services and Education, Foundation for Angelman Syndrome Therapeutics (FAST)

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