Rare Disease Company Coalition
The Rare Disease Company Coalition (RDCC) is a Washington, D.C.-based nonprofit industry coalition of approximately 21 rare disease life science companies, founded in 2021 to advocate for federal and state policies enabling continued investment in rare disease drug development and patient access.
- Company typePrivate
- Founded2021
- HeadquartersWashington, United States
- Headcount1–10
- GTM typeB2B
- OfferingServices
What Rare Disease Company Coalition does
The Rare Disease Company Coalition (RDCC), legally organized as The Coalition for Research, Access, Reform, and Equality for Rare Diseases (RARE), is a Washington, D.C.-based nonprofit industry coalition founded in May 2021. It represents approximately 21 rare disease life science companies that collectively invest more than $12 billion annually in research and development and maintain more than 200 active rare disease development programs. The coalition's mission is to advocate for federal and state policies that enable the cost-effective and timely development and commercialization of rare disease treatments, and to educate policymakers on the unique economics of small-population drug development.
RDCC's "products" are policy and advocacy outputs rather than technology. These include congressional testimony, policy comment letters, coalition letters, white papers and policy briefs (covering Most-Favored Nation pricing, accelerated approval, the Orphan Drug Tax Credit, and newborn screening), congressional webinar briefings, earned media campaigns, podcast appearances, and a multi-channel social media presence on LinkedIn and Twitter/X. There is no proprietary technology platform, no AI/ML capability, and no software or therapeutic product offering. The coalition's core capability is organizing a credible industry bloc and translating the technical and regulatory complexity of rare disease drug development into policy arguments for Congress, FDA, and CMS, with expanding engagement at the state level on Medicaid waivers and drug affordability board proceedings.
RDCC is funded entirely through membership dues from life science companies on a recurring basis; pricing is not publicly disclosed. It operates with a small staff of fewer than 10 employees, including an Executive Director, Director of Public Affairs & Operations, and Senior Manager of Government Affairs, supplemented by an Executive Committee drawn from member companies and standing Federal Policy, State Policy, Regulatory Priorities, and Communications committees. The organization is governed independently with no parent company or external ownership. Member companies include commercial-stage rare disease firms (Alexion/AstraZeneca Rare Disease, BioMarin, Sarepta, Alnylam, Ultragenyx, Recordati Rare Diseases) and pre-commercial or smaller biotechs (Fulcrum Therapeutics, Crinetics, Stoke, Avidity, BridgeBio), with end beneficiaries being the roughly 25–30 million Americans living with a rare disease.
Rare Disease Company Coalition firmographics
Firmographics- Name
- Rare Disease Company Coalition
- Legal name
- The Coalition for Research, Access, Reform, and Equality for Rare Diseases (RARE)
- Website
- https://rarecoalition.com
- Company type
- Private
- Founded year
- 2021
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- The Rare Disease Company Coalition (RDCC) is a Washington, D.C.-based nonprofit industry coalition of approximately 21 rare disease life science companies, founded in 2021 to advocate for federal and state policies enabling continued investment in rare disease drug development and patient access.
- Ownership category
- akta.pro rank
Rare Disease Company Coalition industry classification
Industry- Product category
- Healthcare Policy Advocacy
- NAICS
- Business Associations (813910)
- SIC
- Services-Membership Organizations (8600)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industry
- Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM)
Keywords
Where Rare Disease Company Coalition is headquartered
LocationHeadquarters
- HQ city
- Washington
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Rare Disease Company Coalition business model
Business model- GTM type
- B2B
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others
Revenue model
- Membership Dues: The coalition is funded by membership dues from life science companies that join the coalition. Member companies include rare disease biotech and pharmaceutical companies that pay to participate in the coalition's advocacy, policy education, and collective engagement efforts.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels10 records
Rare Disease Company Coalition product offering
Product offeringCore offering
The Rare Disease Company Coalition (RDCC) is a nonprofit industry coalition of life science companies that engages in collective policy advocacy and education. It informs U.S. federal and state policymakers of the unique challenges of rare disease drug discovery, development, and manufacturing, and advocates for policies such as the Orphan Drug Act, accelerated approval pathway, and priority review vouchers. The coalition represents member companies through congressional testimony, coalition letters, policy briefs, webinars, and media engagement.
Differentiator
Problem solved
Functional benefit
Products and services
- RDCC Membership Coalition membership for life science companies dedicated to rare disease treatment development, providing access to collective advocacy, policy education, and unified engagement with U.S. federal and state policymakers on legislation affecting rare disease drug development.
- Policy Education and Advocacy Services Educational briefings, congressional webinars, coalition letters, comment submissions, and testimony before Congress, FDA, and CMS to inform policymakers on the unique economics and challenges of rare disease drug development.
- Policy Briefs and White Papers One-pagers and policy briefs covering topics such as Most-Favored Nation policies, accelerated approval, the Orphan Drug Tax Credit, newborn screening, and priority review vouchers, distributed to policymakers and the rare disease community.
Quantifiable outcome
- 93% of rare diseases have no FDA-approved treatment, highlighting the critical need for continued rare disease innovation advocacy.
- +2 more outcomes
Companies that use Rare Disease Company Coalition
Customer profileNamed customers30 records
Segments3 records
Ideal customer profiles1 record
Rare Disease Company Coalition technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Rare Disease Company Coalition partnerships and signals
Strategic signalPartnerships
One partnership is on record.
- Alliance for Regenerative MedicinecoreThe Rare Disease Company Coalition and the Alliance for Regenerative Medicine sent a joint letter to Congress urging the reauthorization of the Priority Review Voucher Program. This partnership combines two significant industry voices to advocate for policies supporting rare disease and regenerative medicine innovation.
Scale indicators5 records
Recent moves7 records
Expansion highlights5 records
Rare Disease Company Coalition competitors and assessment
Company assessmentDirect peers
- National Organization for Rare Disorders (NORD): NORD is the leading U.S. patient advocacy organization for rare diseases. It operates from Washington, D.C. and engages Congress and federal agencies on Orphan Drug policy, newborn screening, and access issues that overlap heavily with RDCC's advocacy portfolio.
- Alliance for Regenerative Medicine (ARM): ARM represents the cell and gene therapy industry and partners with RDCC on joint advocacy (e.g., the November 2025 Priority Review Voucher letter). It operates the same Washington-based advocacy model around innovative rare disease therapies.
- EveryLife Foundation for Rare Diseases: EveryLife is a rare disease advocacy nonprofit focused on federal policy and patient access. It runs Washington-based advocacy campaigns on the same legislative and regulatory issues (Orphan Drug Act, newborn screening, accelerated approval) targeted by RDCC.
- Global Genes: Global Genes is a rare disease patient advocacy organization that produces the RARECast podcast and convenes the rare disease community. RDCC's Executive Director has appeared on RARECast reflecting overlap on rare disease education and policy.
Broad incumbents
- Pharmaceutical Research and Manufacturers of America (PhRMA): PhRMA is the principal pharmaceutical industry trade association in the U.S. While RDCC narrows the focus to rare disease biotech, both organizations run Washington-based advocacy operations on overlapping topics including accelerated approval and the Orphan Drug Tax Credit.
- Biotechnology Innovation Organization (BIO): BIO is the largest U.S. trade association representing the biotechnology industry. RDCC complements BIO by focusing narrowly on rare disease drug development policy, but they overlap on the same set of life science companies and federal policy issues.
Others
- Friends of Cancer Research: Friends of Cancer Research is a Washington-based health policy advocacy organization. While focused on oncology rather than rare disease broadly, it works similar regulatory and access policy channels (FDA engagement, accelerated approval) as RDCC.
- Council for Affordable Health Coverage: CAHC is a coalition advocating for policies promoting affordability and innovation in healthcare. Its structure (member-funded, Washington-based) and policy remit overlap with RDCC's approach to engaging on biotech, drug pricing, and innovation issues.
- American Society of Gene & Cell Therapy (ASGCT): ASGCT is a scientific and professional society for gene and cell therapy. Several RDCC members (Sarepta, Stoke, Avidity, Orchard) operate in gene therapy, and ASGCT engages on related regulatory and reimbursement policy issues.
Regional players
- EFPIA (European Federation of Pharmaceutical Industries and Associations): EFPIA is the European pharmaceutical industry trade association. It serves as the EU counterpart to the advocacy model RDCC uses in the U.S., though it does not directly overlap on U.S. federal policy.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat4 records
Key risks5 records
Key highlights6 records
Customer concentration
Rare Disease Company Coalition social profiles
Digital presenceRare Disease Company Coalition financial estimates
Financial estimateRevenue estimate
Valuation estimate
Rare Disease Company Coalition leadership team
Management profileNumber of profiles
Profiles18 records
Rare Disease Company Coalition funding detail
Funding detailFunding overview
Funding rounds
Investors
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Rare Disease Company Coalition M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about Rare Disease Company Coalition
What does Rare Disease Company Coalition do?
The Rare Disease Company Coalition (RDCC) is a nonprofit industry coalition of life science companies that engages in collective policy advocacy and education. It informs U.S. federal and state policymakers of the unique challenges of rare disease drug discovery, development, and manufacturing, and advocates for policies such as the Orphan Drug Act, accelerated approval pathway, and priority review vouchers. The coalition represents member companies through congressional testimony, coalition letters, policy briefs, webinars, and media engagement.
Is Rare Disease Company Coalition a public or private company?
Rare Disease Company Coalition is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Rare Disease Company Coalition founded?
Rare Disease Company Coalition was founded in 2021. It employs 1 to 10 people.
Where is Rare Disease Company Coalition based?
Rare Disease Company Coalition is headquartered in Washington, United States, in the North America region.
How does Rare Disease Company Coalition make money?
One revenue line is on record: membership Dues.
Who are Rare Disease Company Coalition's main competitors?
Direct peers on record are National Organization for Rare Disorders (NORD), Alliance for Regenerative Medicine (ARM), EveryLife Foundation for Rare Diseases and Global Genes. Broad incumbents are Pharmaceutical Research and Manufacturers of America (PhRMA) and Biotechnology Innovation Organization (BIO). Others are Friends of Cancer Research, Council for Affordable Health Coverage and American Society of Gene & Cell Therapy (ASGCT). EFPIA (European Federation of Pharmaceutical Industries and Associations) is listed as a regional player.
Does Rare Disease Company Coalition have an API?
No public API is recorded for Rare Disease Company Coalition.
What industry is Rare Disease Company Coalition in?
Rare Disease Company Coalition's product category is Healthcare Policy Advocacy. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of HLAJAOAM, Global Health Research, Clinical Trials & Product Development Partnerships (PDPs). Its NAICS code is 813910 and its SIC code is 8600.