Jamie Sullivan

[EveryLife Foundation @EveryLifeOrg]

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 https://t.co/NpqTY4cdA5.

[EveryLife Foundation @EveryLifeOrg]

On May 13, the EveryLife Foundation hosted our inaugural Community Congress Leader Hill Day. These powerhouse advocates, who earlier in the week participated in the EveryLife Foundation's Scientific Workshop, met with key Congressional offices to preview our rare disease community's policy priorities as we prepare to engage in PDUFA VIII legislative activities.

This united group of national rare disease patient advocacy organization leaders, who have also been active in coalition regulatory discussions, included: Andrew Rosen, @NAF_Ataxia; Brandi Underwood, International FOXP1 Foundation; Cara O'Neill, @CureSanfilippoF; Fabienne Antoine-Nasser, @SickCells; Jess Myers, @US_HAEA ; Dr. Kim Stephens, @Projectalive; Lynn Hano Albizo, @immunedeficienC; Pat Furlong, @ParentProjectMD; Roxanne Yaghoubi, @EpilepsyFdn; Ryan Fischer, Foundation for Angelman Syndrome Therapeutics (FAST); Terri L. Klein, @MPSSociety; Allie Ladd, @CureMPS1, Inc., and Tricha Shivas, Foundation Sarcoidosis Research. We are so grateful for their participation!

And thank you to all members of our Community Congress whose efforts and expertise contributed to the policy priorities reflected in these Hill discussions. Our #raredisease community leadership’s collective voice is a force multiplier at a time when regulatory momentum is most critical. And we are just getting started.

To learn more about Community Congress, visit: https://t.co/f06q5gSZ4y

To stay updated on what's happening in our community, sign up for our monthly newsletters: https://t.co/p8uCaDsHil

[EveryLife Foundation @EveryLifeOrg]

The EveryLife Foundation urges Congress to support funding and report language in FY 2027 for the Rare Disease Innovation Hub. The Hub facilitates collaboration between the FDA’s Center for Biologic Evaluation and Research (CBER) and Center for Drug Evaluation and Research (CDER) to improve outcomes for patients living with rare diseases. Our Chief Mission Officer, Annie Kennedy, urged Congress to resource the Hub in her witness testimony at the Senate Special Committee on Aging last Thursday during Rare Disease Week 2026.

Currently, only 5% of the more than 10,000 rare diseases have FDA-approved treatments. The approval process for rare disease drugs requires special knowledge and skills across FDA departments. Without clear collaboration, it is challenging to compete the approval process in a timeframe that meets rare disease patients’ needs. The Hub streamlines collaboration between departments to ensure the agency can meet patients' needs.

With proper funding and clear guidelines, the Rare Disease Innovation Hub can improve the FDA’s rare disease drug approval process and transform the lives of patients nationwide.

Encourage your Member of Congress to support funding for the Rare Disease Innovation Hub here: https://t.co/RZXRvKmG2Y

To watch the full Senate Special Committee on Aging hearing here: https://t.co/JtVm57SvnE

[Jamie Sullivan @lamshade09]

Inaction is inexcusable. Thank you to all those who tried to get this across the finish line. We won't stop fighting until it happens.

[EveryLife Foundation @EveryLifeOrg]

Tonight, the Senate attempted to pass The Give Kids a Chance Act (S. 932), legislation that includes the reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program, via unanimous consent. Unfortunately, that vote failed.

While we are deeply disappointed that this vital legislation has not yet reached the finish line in 2025, the momentum created by our advocacy community is unparalleled— and much progress has occurred thanks to the efforts of every member of our rare disease community.

When the Senate returns in January, our community’s advocacy will again be stronger than ever before. Unlike last December, the work to reauthorize the PRV Program does not have to start over from scratch, and with our united voices calling for action, we are hopeful that the Senate will act without delay.

What’s Next?
The EveryLife Foundation calls on the Senate to act swiftly and pass the Give Kids a Chance Act (S. 932) to ensure that life-saving therapy development remains a resource for innovation and treatment.

To learn more about engaging with your Senators to support reauthorization of the PRV Program, and to access shareable resources, please visit https://t.co/le07Z4uSiy

[Jamie Sullivan @lamshade09]

The time for action is now. Let's get this done!

[EveryLife Foundation @EveryLifeOrg]

Tell your Senators to vote yes on the Give Kids a Chance Act ➡️ https://t.co/yXN0t5Ul6l

The time for action is now, and the finish line is right around the corner. Thank you to @SenMullin and @SenatorBennet and HELP Committee leadership, @SenSanders and @SenBillCassidy, for considering the Give Kids a Chance Act before the winter recess. The rare disease community is counting on you.

#reauthorizePRV #Cures4Kids

[EveryLife Foundation @EveryLifeOrg]

‼️The House of Representatives has passed the Give Kids a Chance Act (H.R. 1262)‼️

This key piece of legislation includes policies that will spur progress in therapy development for rare diseases, specifically through the reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program. Today’s milestone comes as a result of community-driven advocacy and dedication from rare disease patients, families, organizations, and others who shared their stories and used their voices to ensure Congress took action. You made this happen! To learn more, visit our website ➡️ https://t.co/VH24at7KEV

We're one step closer to reauthorizing the PRV Program. With the House of Representatives' support behind us, we must urge our Senators to follow suit! Tell your Senator to support the Give Kids a Chance Act now ➡️https://t.co/yXN0t5Ul6l

[EveryLife Foundation @EveryLifeOrg]

📢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 @HouseCommerce @EnergyCommerce, @RepGuthrie 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://t.co/yXN0t5Ul6l

[EveryLife Foundation @EveryLifeOrg]

Today, on National Patient Advocacy Day, we honor and celebrate the relentless advocates who give voice to the 30 million Americans living with rare diseases. Your courage, determination, and persistence continue to drive meaningful change and bring hope to countless families.

💜 Know an advocate who’s made a difference in your life? Tag them! Or take it a step further and make a gift to the EveryLife Foundation in their honor, and we’ll send them a personal thank-you note on your behalf. Let's thank those that inspire us!

[EveryLife Foundation @EveryLifeOrg]

⏰In light of the passage of H.R.1 (the One Big Beautiful Bill Act), the EveryLife Foundation for Rare Diseases' RDLA Program will be holding a webinar for the rare disease community on Thursday, July 10 at 2pm eastern to better understand what this legislation may mean for us and our loved ones.
Register here: https://t.co/npSpbkm8dn

[EveryLife Foundation @EveryLifeOrg]

This week, Congress continues their work on budget reconciliation. As the Senate considers passing major cuts to Medicaid, there's still time to share your Medicaid story.

To learn more about how YOU can take action, visit: https://t.co/x8tp20pKpe

#IAmMedicaid #RareDisease

[EveryLife Foundation @EveryLifeOrg]

‼️ URGENT: The House just passed a bill with the largest cut to Medicaid ever. This could strip health coverage from 13.7 million people - including 8.6 million who rely on Medicaid.

This is devastating news for the rare disease community. Medicaid is a lifeline for diagnoses, treatment, home care, and more.

Now it’s in the Senate, and there’s still time to act.

👉 Tell your Senator to reject policies that will terminate healthcare and harm rare disease patients and families ➡️https://t.co/tHNgIEwsf0

⁉️ Looking for more background? Learn more here: https://t.co/xyAreD3YoK

[AAMC @AAMCtoday]

NIH-funded research saved this baby’s life. His rare genetic disorder was treated with what his doctor called “…one of the most potentially transformational technologies out there.”

Here's how the breakthrough could end up saving someone you love:
https://t.co/xxmBgVeyoj

[Jamie Sullivan @lamshade09]

“It shouldn’t be this hard to save the lives of children”

#savenewbornscreening #raredisease @RareAdvocates @EveryLifeOrg

[EveryLife Foundation @EveryLifeOrg]

"Medicaid isn’t just a policy, it’s what makes hope possible." For Sky Collins and her family, #Medicaid is a lifeline that helps their daughter live with independence, dignity, and connection through #HCBS Waivers. But proposed Medicaid funding cuts could threaten this vital program -- including access to waivers -- putting thousands of rare disease patients, like Sky's daughter, at risk of losing the care they rely on.

👉 Help protect Medicaid — take 2 minutes to contact your Member of Congress: https://t.co/jiuIBA7EvD

#IAmMedicaid #RareDisease #policy

[EveryLife Foundation @EveryLifeOrg]

➡️ JOIN OUR TEAM!
The EveryLife Foundation is seeking a State Policy Manager to join our team.

The State Policy Manager supports the Foundation’s state strategic priorities and works closely with advocates and policymakers to advance rare disease legislation.

If you or someone you know fits this description, tag them in this post or visit: https://t.co/0psaPaHiWu

#hiring #statepolicymanager #rarediseaseadvocacy

[EveryLife Foundation @EveryLifeOrg]

The rare disease community is starting a new week facing a significantly different reality.

More than 20,000 federal roles have been eliminated, impacting agencies with direct impact on our rare community.

Read full news post here: https://t.co/nKOcpwRNnG

𝗧𝗵𝗲𝗿𝗲 𝗶𝘀 𝗻𝗼 𝗿𝗼𝗮𝗱𝗺𝗮𝗽 𝘁𝗼 𝗵𝗲𝗹𝗽 𝘂𝘀 𝗻𝗮𝘃𝗶𝗴𝗮𝘁𝗲 𝘁𝗵𝗶𝘀 𝘂𝗻𝗰𝗲𝗿𝘁𝗮𝗶𝗻𝘁𝘆. 𝗕𝘂𝘁 𝘆𝗼𝘂 𝗮𝗿𝗲 𝗻𝗼𝘁 𝗮𝗹𝗼𝗻𝗲. 𝗧𝗵𝗲 𝗘𝘃𝗲𝗿𝘆𝗟𝗶𝗳𝗲 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻 𝘁𝗲𝗮𝗺 𝗶𝘀 𝘄𝗼𝗿𝗸𝗶𝗻𝗴 𝗳𝗼𝗿 𝘆𝗼𝘂 – 𝗮𝗻𝗱 𝗮𝗹𝗼𝗻𝗴𝘀𝗶𝗱𝗲 𝘆𝗼𝘂. 𝗨𝗻𝗶𝘁𝗲𝗱. 𝗔𝗺𝗽𝗹𝗶𝗳𝗶𝗲𝗱. 𝗔𝗻𝗱 𝗦𝘁𝗿𝗼𝗻𝗴𝗲𝗿 𝘁𝗵𝗮𝗻 𝗲𝘃𝗲𝗿.

[O. Rose Broderick @rosebroderick_]

RFK Jr is laying off 10k federal employees at HHS. Are you a federal employee who works at SAMHSA or ACL??? I want to talk with you, in particular. DMs are open. Email is [email protected]. Signal is rosebroderick.11. Please share! #disability #journorequest

[EveryLife Foundation @EveryLifeOrg]

Advocates, in honor of each of the 10,000 rare disease communities served by the biomedical research and public health ecosystem, please help us cross the threshold by signing this petition! Only 1,000 more signatures to reach our goal! https://t.co/FHJMFZomTP

[FSR @StopSarcoidosis]

As we recognize Rare Disease Week 2025, we urge you to sign the petition to Congress and advocate for continued federal support of biomedical research, public health resources, and strong leadership for rare diseases.
https://t.co/0ojWXFtY1a
#RareDiseaseWeek2025 #RareDC2025

[RARE Foundation @RareAdvocates]

We are 30 million Americans strong! Urge Congress to continue their support of steady and robust federal agency leadership, federal biomedical research funding, and public health agency resources.

✍📨 Sign and share! https://t.co/8Yr5tRiwTX