EveryLife Foundation for Rare Diseases

What EveryLife Foundation for Rare Diseases does

EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit organization founded in 2009 by Dr. Emil Kakkis, a geneticist who developed Aldurazyme for MPS I. Headquartered in Washington, D.C. at 1012 14th Street NW Suite 500, the foundation operates the RareHub, a shared office space for rare disease organizations. Its mission is to empower the 30 million Americans living with one or more of the over 10,000 known rare diseases to advance science-driven legislation and policy that accelerates equitable development of and access to diagnoses, treatments, and cures. The foundation addresses three structural problems in the rare disease space: the 6.3-year average diagnostic odyssey, the absence of FDA-approved treatments for 93–95% of known rare diseases, and the 15-year average FDA approval timeline for orphan drugs.

The foundation operates as a community-led advocacy organization, not a technology or product company. It runs a portfolio of programs including Rare Disease Week on Capitol Hill, the Young Adult Rare Representatives (YARR) program, the Rare Disease Legislative Advocates (RDLA) clearinghouse, the Community Congress, the biennial Scientific Workshop, the RareVoice Awards, the RAREis Scholarship (in partnership with Amgen), Rare Artist, Rare Across America, the Newborn Screening Action Center, Pride in Rare, and the Advocacy Mentorship Program. The organization mobilizes advocates to engage directly with the FDA, NIH, HHS, and Congress, and has helped grow the bipartisan Rare Disease Congressional Caucus to 135+ members.

The foundation's revenue derives from individual donations, major gifts, and a tiered corporate sponsorship program. The RDLA supporter program lists Sanofi at the President level, Amgen and Merck at the Leader level, Genentech, Kyowa Kirin, Pfizer, Takeda, and Travere at the Nominee level, Ultragenyx and Sobi at the Advocate level, and Alnylam, Amicus, Chiesi, Pharming, Soleno, Rhythm, Scholar Rock, and Vertex at the Grassroots level. Founded as a 501(c)(3) charity, the foundation provides all programs free of charge to the rare disease community and supplements the work of nearly 200 patient organizations that have signed the CURETHEPROCESS pledge. As of 2026, PSQ Holdings, Inc. has signed a definitive agreement to divest EveryLife as part of its continuing operations.

Name

EveryLife Foundation for Rare Diseases

Legal name

EveryLife Foundation for Rare Diseases

Website

https://everylifefoundation.org

Company type

Private

Founded year

2009

Operating status

Operating

Headcount range

1–10 employees

Short description

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit founded in 2009 that mobilizes rare disease patients, caregivers, and advocates to advance science-driven legislation and regulatory policy in Washington, D.C. for the 30 million Americans living with rare diseases.

Ownership category

akta.pro rank

Product category

Nonprofit Rare Disease Policy Advocacy

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Grantmaking Foundations (813211)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Membership Organizations (8600)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Health policy research
• Patient community mobilization
• Legislative advocacy training
• Nonprofit health coalition

Headquarters

HQ city

Novato

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure

Revenue model

1. Individual and Corporate Donations: The foundation raises revenue through individual donations, major gifts, and corporate sponsorships from pharmaceutical and biotechnology companies. The RDLA program lists tiered supporter levels including President (Sanofi), Leader (Amgen, Merck), Nominee (Genentech, Kyowa Kirin, Pfizer, Takeda, Travere), Advocate (Ultragenyx, Sobi), and Grassroots (Alnylam, Amicus, Chiesi, Pharming, Soleno, Rhythm, Scholar Rock, Vertex) levels.
2. Scholarship Fund Partnerships: The #RAREis Scholarship Fund is created in partnership with Amgen, supporting students living with rare diseases with scholarships valued at $5,000 each. The program has awarded 491 scholarships totaling over $2.45 million since its launch.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels8 records

Core offering

EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit that delivers free advocacy, policy, and community-mobilization programs for the rare disease community. Its core offerings include the Rare Disease Legislative Advocates (RDLA) clearinghouse, Rare Disease Week on Capitol Hill, the RAREis Scholarship Fund, Young Adult Rare Representatives (YARR), Community Congress, RareHub shared workspace, RareVoice Awards, and policy research such as the National Economic Burden of Rare Disease study. Programs are funded by individual donations, corporate sponsorships, and grants, and are provided at no cost to patients, caregivers, patient organizations, and policymakers.

Product overview

The EveryLife Foundation for Rare Diseases is a nonprofit organization offering a portfolio of advocacy programs rather than a unified tech product. The core offerings include Rare Disease Week on Capitol Hill, the RareVoice Awards recognition program, the RAREis Scholarship, Rare Artist creative expression program, and the Young Adult Rare Representatives (YARR) leadership program. The organization operates Rare Disease Legislative Advocates (RDLA) as a clearinghouse providing advocacy tools, legislative scorecards, webinars, and policy consulting. Additional programs include Community Congress for strategic advisory, an Advocacy Mentorship Program, Rare Across America district outreach, the Newborn Screening Action Center, and the RareHub shared workspace in Washington, D.C. These programs collectively aim to empower rare disease patients and advocates to drive science-driven legislation and policy.

Differentiator

Problem solved

Functional benefit

Brands

• RAREis Scholarship: Scholarship program created in partnership with Amgen to support students living with rare diseases
• RareVoice Awards
• YARR (Young Adult Representatives)
• Rare Artist
• RareHub

Products and services

• Rare Disease Legislative Advocates (RDLA) Advocacy support program providing action alerts, event support, policy consulting, legislative scorecards, webinars, and shared office space for rare disease patient advocates and organizations.
• Rare Disease Week on Capitol Hill Annual in-person event bringing together patients, caregivers, advocates, and policymakers to advance rare disease legislation through congressional caucus briefings and Senate hearings. The 2026 event drew more than 800 advocates from 49 states, DC, and Puerto Rico.
• RAREis Scholarship Scholarship fund created in partnership with Amgen supporting students living with rare diseases, providing $5,000 awards along with mentorship, peer networking, and resources for navigating challenges unique to rare disease patients.
• Young Adult Rare Representatives (YARR) Program cultivating rare disease advocates ages 16 to 30 through leadership development, advocacy training, and opportunities to participate in policy efforts such as Rare Disease Week on Capitol Hill.
• Community Congress Membership-based program bringing patient organizations, industry leaders, and rare disease stakeholders together as a strategic advisory council to identify and guide the foundation's policy priorities.
• RareHub Office Space Shared office space in Washington, D.C., serving as headquarters for the EveryLife Foundation and collaborative workspace for rare disease advocacy organizations.
• RareVoice Awards Annual awards program recognizing exceptional advocates who champion rare disease patient voices in state and federal policy.
• Rare Artist Program enabling rare disease patients to express their experiences and stories through art, featuring annual contests and awards.
• Rare Across America Program engaging advocates to meet with Members of Congress in their district offices during August recess to advance rare disease legislative priorities.
• Advocacy Mentorship Program Program pairing new advocates with experienced mentors to help navigate the advocacy journey, build confidence, and connect lived experience to current legislative priorities.
• Newborn Screening Action Center Resource hub providing information on newborn screening policies, state bill tracking, modernization studies, and support for the Newborn Screening Saves Lives Reauthorization Act.
• Rare Giving Grant program providing financial support for rare disease advocacy events and initiatives through sponsorships.
• Pride in Rare Program focused on supporting the LGBTQ+ rare disease community through advocacy and resources.
• Scientific Workshop Biennial convening of patient advocates, biopharmaceutical companies, academic researchers, and federal agency leaders to advance patient-centered approaches in rare disease therapy development.

Quantifiable outcome

• The foundation activated advocates from 49 states, DC, and Puerto Rico at the 15th Annual Rare Disease Week on Capitol Hill in February 2026.
• +4 more outcomes

Named customers3 records

Segments6 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

25 partnerships are on record, tiered president level, leader level, nominee level, advocate level, grassroots level, core and minor.

• Sanofipresident levelGTM or Marketing PartnerSanofi serves as the President-level supporter of the Rare Disease Legislative Advocates (RDLA) program, supporting the foundation's advocacy and policy programs for the rare disease community.
• Amgenleader levelGTM or Marketing PartnerAmgen is a Leader-level supporter of RDLA and a key partner in the #RAREis Scholarship Fund, which has awarded 491 scholarships totaling over $2.45 million to students living with rare diseases.
• Merckleader levelGTM or Marketing PartnerMerck serves as a Leader-level supporter of RDLA, supporting the foundation's advocacy programs and rare disease policy initiatives.
• Genentechnominee levelGTM or Marketing PartnerGenentech is a Nominee-level supporter of RDLA, contributing to the foundation's rare disease advocacy and policy programs.
• Pfizernominee levelGTM or Marketing PartnerPfizer is a Nominee-level supporter of RDLA, supporting the foundation's rare disease policy and advocacy initiatives.
• Takedanominee levelGTM or Marketing PartnerTakeda is a Nominee-level supporter of RDLA, supporting rare disease advocacy programs and policy initiatives.
• Kyowa Kirinnominee levelGTM or Marketing PartnerKyowa Kirin is a Nominee-level supporter of RDLA for rare disease advocacy.
• Travere Therapeuticsnominee levelGTM or Marketing PartnerTravere Therapeutics is a Nominee-level supporter of RDLA, supporting the foundation's rare disease advocacy programs.
• Ultragenyxadvocate levelGTM or Marketing PartnerUltragenyx is an Advocate-level supporter of RDLA, supporting rare disease advocacy and policy programs.
• Sobiadvocate levelGTM or Marketing PartnerSobi is an Advocate-level supporter of RDLA for rare disease advocacy.
• Alnylam Pharmaceuticalsgrassroots levelGTM or Marketing PartnerAlnylam is a Grassroots-level supporter of RDLA, supporting rare disease advocacy.
• Amicus Therapeuticsgrassroots levelGTM or Marketing PartnerAmicus Therapeutics is a Grassroots-level supporter of RDLA.
• Chiesi Global Rare Diseasesgrassroots levelGTM or Marketing PartnerChiesi Global Rare Diseases is a Grassroots-level supporter of RDLA.
• Vertex Pharmaceuticalsgrassroots levelGTM or Marketing PartnerVertex Pharmaceuticals is a Grassroots-level supporter of RDLA.
• Scholar Rockgrassroots levelGTM or Marketing PartnerScholar Rock is a Grassroots-level supporter of RDLA.
• Rhythm Pharmaceuticalsgrassroots levelGTM or Marketing PartnerRhythm Pharmaceuticals is a Grassroots-level supporter of RDLA.
• Soleno Therapeuticsgrassroots levelGTM or Marketing PartnerSoleno Therapeutics is a Grassroots-level supporter of RDLA.
• Pharminggrassroots levelGTM or Marketing PartnerPharming is a Grassroots-level supporter of RDLA.
• Rare Disease Legislative Advocates (RDLA) Coalition MemberscoreStrategic or Co-development PartnerNearly 200 patient organizations have signed the CURETHEPROCESS pledge, endorsing campaign objectives to enhance access to the Accelerated Approval pathway, allow alternative clinical trial designs, and encourage more specialized FDA drug review.
• RareHub Partner OrganizationscoreStrategic or Co-development PartnerThe RareHub, located in Washington, D.C., is a shared office space for rare disease organizations, fostering collaboration and resource-sharing among member organizations of the rare disease advocacy community.
• Rare Disease Congressional CaucuscoreStrategic or Co-development PartnerA bipartisan, bicameral Congressional caucus with 135+ House and Senate members co-chaired by Representatives Doris Matsui and Gus Bilirakis in the House and Senators Roger Wicker and Amy Klobuchar in the Senate. The caucus serves as the primary legislative vehicle for rare disease advocacy in Congress.
• National Health CouncilminorStrategic or Co-development PartnerThe foundation is a member of the National Health Council, meeting all Standards of Excellence Certification Program requirements.
• Community Congress MemberscoreStrategic or Co-development PartnerThe EveryLife Foundation Community Congress is a membership-based program that brings together patient organizations, industry leaders, and rare disease stakeholders as a strategic advisory council to identify and guide the foundation's policy priorities.
• Amgen (#RAREis Scholarship Partnership)coreGTM or Marketing PartnerAmgen partnered with the foundation to create the #RAREis Scholarship Fund, awarding $5,000 scholarships to students living with rare diseases. The program has awarded 491 scholarships totaling over $2.45 million since its launch six years ago, with recipients spanning 35 states and over 90 colleges.
• Foundation for Sarcoidosis ResearchminorStrategic or Co-development PartnerThe Foundation for Sarcoidosis Research (FSR) received the 2025 RareVoice Award from EveryLife for its federal advocacy work securing a U.S. Department of Labor FMLA clarification providing job-protected leave for clinical trial participants, affecting 60 million employees. FSR achieved this through its Coalition to Transform Clinical Trial Engagement and Champions for Changes – PTO Initiative.

Scale indicators9 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• National Organization for Rare Disorders (NORD): The largest U.S. rare disease patient advocacy organization, also a 501(c)(3) that drives rare disease policy, patient programs, and FDA engagement. Directly comparable mission, constituency, and federal advocacy model.
• Muscular Dystrophy Association (MDA): Large U.S. neuromuscular and rare disease nonprofit with federal advocacy, research funding, and patient services. Comparable policy advocacy footprint and rare disease focus; also a previous employer of EveryLife's Chief Mission Officer.
• Foundation for Sarcoidosis Research: Disease-specific rare disease nonprofit that has won major federal policy outcomes (FMLA clarification benefiting 60M employees) recognized by EveryLife's RareVoice Awards. Closely comparable advocacy model and outcome profile.
• Genetic Alliance: A nonprofit health advocacy organization focused on genetics and rare disease policy, patient engagement, and newborn screening. Comparable advocacy, coalition-building, and federal policy engagement model.
• Parent Project Muscular Dystrophy (PPMD): Disease-specific rare disease nonprofit that runs federal advocacy, newborn screening campaigns, and policy research. Directly comparable operating model; EveryLife's Chief Mission Officer Annie Kennedy previously served there.

Broad incumbents

• Alzheimer's Association: Large disease-focused nonprofit with extensive federal advocacy, congressional caucus engagement, and pharma partnerships. Comparable in mobilizing advocates into Capitol Hill activity, though at greater scale.
• American Cancer Society Cancer Action Network: Disease-specific 501(c)(3) advocacy arm operating major federal lobbying, congressional mobilization, and policy research. Same structural model (501(c)(3) advocacy + separate lobbying arm) applied at larger scale.
• Cystic Fibrosis Foundation: Large, well-resourced rare disease nonprofit with deep FDA engagement, major pharma partnerships, and federal advocacy infrastructure. Comparable patient-driven policy model with substantially greater resources.
• National Health Council: Umbrella organization for U.S. patient advocacy and health nonprofits that issues the Standards of Excellence certification EveryLife holds. A strategic-level peer that convenes the broader chronic and rare disease advocacy ecosystem.

Others

• Research!America: Advocacy alliance for U.S. medical and health research with deep federal legislative engagement. Previous employer of EveryLife Senior Director of Policy Dylan Simon; adjacent policy-research-and-advocacy peer.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/EveryLifeOrg
• YouTubeyoutube.com/channel/UCL155EYAyLhYiPe-a1PbXTw
• Facebookfacebook.com/EveryLife4RareDiseases
• LinkedInlinkedin.com/company/everylifeorg
• Instagraminstagram.com/EveryLifeOrg

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles20 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about EveryLife Foundation for Rare Diseases