EveryLife Foundation for Rare Diseases

EveryLife Foundation for Rare Diseases Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from EveryLife Foundation for Rare Diseases, Medical and health, Washington D.C., DC.
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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.

đź“… Yesterday, the EveryLife Foundation for Rare Diseases hosted our North Carolina State Advocacy Day, where around 25 ad...
05/20/2026

đź“… Yesterday, the EveryLife Foundation for Rare Diseases hosted our North Carolina State Advocacy Day, where around 25 advocates gathered in Raleigh to advocate for rare disease priorities! This amazing group asked their legislators to fully fund the Rare Disease Advisory Council (H.B.116), expand biomarker testing (H.B.567), and ensure that rare disease patients are considered as the state implements Medicaid changes due to H.R.1. Thank you to our event partners National Bleeding Disorders Foundation of North Carolina, National MPS Society, and American Cancer Society Cancer Action Network (ACS CAN).

We look forward to seeing you all next time!

To learn more about rare disease advocacy work happening in North Carolina, visit our website: https://everylifefoundation.org/rdla-state-advocacy-hub/rdla-state-advocacy-north-carolina/

We’re proud to share that the EveryLife Foundation has officially secured spots for the 2026 TCS New York City Marathon ...
05/19/2026

We’re proud to share that the EveryLife Foundation has officially secured spots for the 2026 TCS New York City Marathon on November 1 and four incredible advocates will raise awareness, amplify voices, and carry the rare disease community across the finish line with them.

Building on the momentum of our inaugural team at the United Airlines NYC Half Marathon, our endurance program continues to grow, bringing our community together in new and meaningful ways to advance our mission.

In the weeks ahead, we'll introduce you to each of our team members, the moments that moved them, the people who inspired them, and why they chose to show up for the rare disease community in this way. Because this movement belongs to all of us.

Whether you're cheering from the sidelines, sharing a story, or advocating from wherever you are — every voice, every action, and every act of solidarity move this mission forward.

This is what community looks like. Showing up together. For all of us.

Applications are now open for the Paula Kovarick Segalman Family Scholarship for ALS, part of the EveryLife Foundation’s...
05/12/2026

Applications are now open for the Paula Kovarick Segalman Family Scholarship for ALS, part of the EveryLife Foundation’s Community Scholarship Program. This renewable scholarship supports students living with ALS, or with an immediate family member with ALS, pursuing higher education during the 2026–2027 school year. Learn more and apply by June 18, 2026, at 2 PM ET: https://hubs.li/Q04gjGY80.

Local to the DMV? Learn more about the Segalman family’s event supporting the scholarship this week on the scholarship website.

Registration for Rare Across America 2026 is officially open! Meet with your Members of Congress virtually and at their ...
05/12/2026

Registration for Rare Across America 2026 is officially open! Meet with your Members of Congress virtually and at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story.

Meetings will take place from August 10 to 21, and registration closes on Friday, July 17. Make an impact in your community at

Register here: https://hubs.li/Q04gjLFM0

Become a mentor today!Apply now to be a part of the RDLA Advocacy Mentorship Program. Advocates with any level of experi...
05/01/2026

Become a mentor today!

Apply now to be a part of the RDLA Advocacy Mentorship Program. Advocates with any level of experience can apply. The program is a year-round support system for advocates seeking more 1:1 assistance in their advocacy development and allows experienced advocates to hone their leadership skills.

Apply here: https://hubs.ly/Q04f7C-X0

04/29/2026

The EveryLife Foundation submitted comments in response to the FDA’s draft guidance on the Plausible Mechanism Framework for the development of individualized therapies targeting specific genetic conditions with known biological causes. This framework is a set of recommendations to help those developing individualized therapies generate sufficient evidence that they are safe and effective, and that they can be manufactured appropriately.

Our comments reflected input from our Community Congress coalition and included requests for FDA to clarify how the Framework will be applied to broader populations and technologies and suggestions for how to maximize the impact of the Framework, including: leveraging the Rare Disease Innovation Hub to convene stakeholders, publishing scenario-based case studies, ensuring adequate FDA staffing and scientific expertise, encouraging shared data platforms to leverage preclinical/toxicology/manufacturing knowledge, and clarifying how patient preference/experience data and patient organizations will be incorporated. We also urged continued investment in natural history studies, biomarkers, and clearer evidence standards for surrogate markers, including a more streamlined qualification pathway.

To read our full comments, visit our website:

Registration Open Now!Registration for virtual Youth and Teen Advocacy Day is now open. RDLA invites members of the rare...
04/28/2026

Registration Open Now!

Registration for virtual Youth and Teen Advocacy Day is now open. RDLA invites members of the rare disease community between 10 and 18 years old with a connection to rare diseases to participate in this amazing opportunity. Advocates will meet virtually with their Members of Congress and share their rare disease story.

Prior to these meetings, participants will attend virtual trainings on how Congress creates laws, how to use their voice and share their story with legislators, and how to understand key issues affecting the rare disease community, designed for youth and teens.

Registration closes on Friday, May 22. Register now using the following link: https://hubs.li/Q04dP3kg0

‼️ The EveryLife Foundation has signed two letters highlighting the importance of Medicaid to our rare disease community...
04/28/2026

‼️ The EveryLife Foundation has signed two letters highlighting the importance of Medicaid to our rare disease community. The patient advocacy and disability communities are united in urging Congress to avoid further cuts to critical healthcare programs in the budget reconciliation process.

State Medicaid programs are facing difficult decisions as they begin implementing changes passed in last year's One Big Beautiful Bill Act (H.R. 1). Some states have proposed cutting critical Home and Community-Based Services programs that our community relies on to receive care in our homes, rather than being forced into institutional settings. Lately, we've seen claims that HCBS programs are vulnerable to fraud, and that hard-fought policy advances, such as paid family caregiving services, should be eliminated.

For the rare disease community, Medicaid's Home and Community-Based Services programs mean greater independence, better quality of life, and care that actually reflects the needs of patients and families. Protecting program integrity is important, but it should never come at the expense of the people who rely on these services every day.

As we continue to work on both the state and federal level to protect Medicaid funding, including HCBS programs, we urge you to share your Medicaid story and highlight the program's impact on the rare disease community ➡️ https://everylifefoundation.quorum.us/campaign/145923/

To read both of the letters, visit our website ➡️ https://everylifefoundation.org/policy-papers/

đź“Ł Last call! Applications for the Scholarship Fund close on Tuesday, April 28, at 2 PM Eastern. 58 individuals in the ...
04/23/2026

đź“Ł Last call! Applications for the Scholarship Fund close on Tuesday, April 28, at 2 PM Eastern.

58 individuals in the rare disease community will receive $5,000 scholarships to support their education this fall. Don’t miss this opportunity to take the next step in your education and career.

Apply now at https://hubs.li/Q04dbDBp0.

‼️ Today, Congress is taking the first step on appropriations to fund the Food and Drug Administration’s FY27 operations...
04/23/2026

‼️ Today, Congress is taking the first step on appropriations to fund the Food and Drug Administration’s FY27 operations, including the critical work the FDA does to evaluate therapies for rare diseases. In advance of the markup, the EveryLife Foundation submitted a statement to the subcommittee, urging lawmakers to support the inclusion of funding for the Rare Disease Innovation Hub, an ask first made by the hundreds of advocates who joined us in Washington, DC for Rare Disease Week 2026.

The rare disease community is requesting that the Hub receive $5 million in funding to carry out its agenda, which includes hosting additional RISE Workshops, creating opportunities for rare disease patient organizations and experts to inform the therapy development and evaluation process, and streamlining navigation of the FDA’s rare disease resources. Dedicating funds to the RDIH ensures that the Hub can continue to grow its role in improving coordination across the FDA, leading to more consistent approaches to rare disease therapy development.

This request is supported by more than 25 Congressional members who sent a letter to the subcommittee in March, and we look forward to continuing to work with Congress to ensure that the Rare Disease Innovation Hub is resourced and can work to its fullest potential.

Share your support for rare disease funding at the FDA ➡️ https://everylifefoundation.quorum.us/campaign/157296/

Read the full statement on our website➡️ https://everylifefoundation.org/the-everylife-foundation-submitted-a-statement-to-congress-urging-lawmakers-to-support-the-inclusion-of-funding-for-the-rare-disease-innovation-hub/

From June 9-11 in Boston, MA, the World Orphan Drug Congress USA will once again bring together pharmaceutical companies...
04/16/2026

From June 9-11 in Boston, MA, the World Orphan Drug Congress USA will once again bring together pharmaceutical companies, government officials, patient advocates, and other crucial stakeholders who contribute to developing and improving access to life-saving therapies for rare disease patients. With over 280 speakers and 2,000 attendees, this event is an opportunity to develop innovative solutions to the challenges that orphan drug development poses.

Our Chief Mission Officer, Annie Kennedy, will speak on the first day of the event at 9:20 am during the keynote titled, “Building a Patient-Centered Policy Framework for Rare Disease Drug Development.” The keynote will focus on how policymakers, regulators, and industry can collaborate to create strategies that incorporate patient insights into all stages of drug development.

You can join Annie and the EveryLife Foundation at this event for free with a guest pass. Click the following link to access the guest pass application form to secure a spot: https://secure.terrapinn.com/V5/sponsor-guest/11031/a0AN200000inZjFMAU?utm_source=partners&utm_medium=everylifefoundation&utm_campaign=part&trc=part

You can learn more about this year’s World Orphan Drug Congress USA here: https://www.terrapinn.com/conference/world-orphan-drug-congress-usa/index.stm?utm_source=partners&utm_medium=everylifefoundation&utm_campaign=part&trc=part

Address

Washington D.C., DC

Opening Hours

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

Telephone

+12026977273

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