Rare Disease Diversity Coalition
Rare Disease Diversity Coalition is a US nonprofit advocacy coalition founded in 2020 by the Black Women's Health Imperative to address systemic inequities in rare disease care for historically marginalized populations, serving patients, advocacy groups, healthcare providers, and pharma partners through research, education, fellowships, and policy advocacy.
- Company typePrivate
- Founded2020
- HeadquartersAtlanta, United States
- Headcount11–50
- GTM typeB2B
- OfferingServices
What Rare Disease Diversity Coalition does
Rare Disease Diversity Coalition (RDDC) is a US-based nonprofit advocacy coalition founded in 2020 by the Black Women's Health Imperative (BWHI) and headquartered in Atlanta, Georgia. RDDC addresses systemic inequities in rare disease diagnosis, treatment, and clinical research for historically marginalized populations — including communities of color, LGBTQIA+, rural, and lower-income patients among the more than 30 million Americans living with rare diseases.
RDDC does not sell products in the commercial sense; its core offerings are programmatic and evidence-based. These include the 'Breaking Barriers to Genetic Testing' initiative, the Rare Disease Day Toolkit, the annual Policy Report, disease-specific SDOH reports (e.g., the Myasthenia Gravis Patient-Caregiver report with MGFA), the 'Inequities in the Rare Disease Community' national survey report (conducted with NORD, involving 2,800+ participants), the RDDC Fellowship Program launched in 2023, the DEI Organizational Readiness Quiz, and advocacy campaigns such as 'RISE for Rare' and 'Know Your Family History.' Distribution is delivered through digital content, events (Hill Briefings, RARE Health Equity Forum, NMQF Leadership Summit), webinars, and partner organization channels.
RDDC's revenue model is nonprofit sponsorship and donations rather than commercial pricing. It is funded by founding sponsor Travere Therapeutics and additional pharmaceutical and biotech partners (Amgen, Novartis, Vertex, UCB, Sobi), with the strategic partner base expanded to 90+ organizations by 2025. Governance rests under BWHI; the coalition is led by Executive Director Jenifer Ngo Waldrop (since October 25, 2022) with a staff of 11–50. There is no disclosed AI/ML capability, native app, or commercial API; technology surface is limited to a content website and digital resource distribution.
Rare Disease Diversity Coalition firmographics
Firmographics- Name
- Rare Disease Diversity Coalition
- Legal name
- Rare Disease Diversity Coalition
- Website
- https://rarediseasediversity.org
- Company type
- Private
- Founded year
- 2020
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- Rare Disease Diversity Coalition is a US nonprofit advocacy coalition founded in 2020 by the Black Women's Health Imperative to address systemic inequities in rare disease care for historically marginalized populations, serving patients, advocacy groups, healthcare providers, and pharma partners through research, education, fellowships, and policy advocacy.
- Ownership category
- akta.pro rank
Rare Disease Diversity Coalition industry classification
Industry- Product category
- Healthcare Advocacy Services
- NAICS
- Individual and Family Services (6241), Voluntary Health Organizations (813212), Civic and Social Organizations (81341)
- SIC
- Services-Social Services (8300), Services-Membership Organizations (8600)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industry
- Public Health & Health Equity Organizations (BPAGACAL)
Keywords
Where Rare Disease Diversity Coalition is headquartered
LocationHeadquarters
- HQ city
- Atlanta
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Rare Disease Diversity Coalition business model
Business model- GTM type
- B2B
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure
Distribution channels3 records
Marketing channels7 records
Rare Disease Diversity Coalition product offering
Product offeringCore offering
Rare Disease Diversity Coalition is a nonprofit advocacy coalition that brings together patient organizations, healthcare professionals, researchers, policymakers, and biopharmaceutical companies to address health disparities affecting historically marginalized people living with rare diseases. It delivers its impact through education and awareness initiatives, original research and policy reports, a fellowship program, organizational DEI tools, and disease-specific patient/caregiver studies. The coalition operates under the fiscal sponsorship and leadership of the Black Women's Health Imperative.
Product overview
The Rare Disease Diversity Coalition (RDDC) is a coalition-based advocacy organization, not a traditional product company. RDDC operates as a unified advocacy platform comprising multiple initiatives and programs focused on health equity in rare disease care for historically marginalized populations. The core offerings include: educational resources (Breaking Barriers to Genetic Testing, Rare Disease Day Toolkits), research reports (Inequities in the Rare Disease Community Report, RDDC 2025 Policy Report, Myasthenia Gravis SDOH Report), professional development programs (RDDC Fellowship Program, DEI Organizational Readiness Quiz), and advocacy campaigns (RISE for Rare, Know Your Family History Initiative). These programs work together to advance evidence-based solutions that alleviate the disproportionate burden of rare diseases on communities of color.
Differentiator
Problem solved
Functional benefit
Brands
- RISE for Rare Campaign: Multi-channel awareness campaign to build awareness around rare disease health disparities in communities of color
- Breaking Barriers to Genetic Testing
- RDDC Fellowship Program
Products and services
- Breaking Barriers to Genetic Testing Initiative
- RDDC Fellowship Program
- Rare Disease Day Toolkit
- RDDC 2025 Policy Report
- Understanding Health Inequities in Myasthenia Gravis Through the Patient-Caregiver Lens
- Inequities in the Rare Disease Community Report
- DEI Organizational Readiness Quiz
- Know Your Family History Initiative
- RISE for Rare Campaign
- RDDC 2025 Achievement Report
Companies that use Rare Disease Diversity Coalition
Customer profileSegments4 records
Ideal customer profiles3 records
Rare Disease Diversity Coalition technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Rare Disease Diversity Coalition partnerships and signals
Strategic signalPartnerships
19 partnerships are on record, tiered core and general.
- Myasthenia Gravis Foundation of America (MGFA)coreCollaboration on the report 'Understanding Health Inequities in Myasthenia Gravis Through the Patient–Caregiver Lens' exploring social determinants of health for MG patients.
- National Organization for Rare Disorders (NORD)corePartnership to conduct the first-ever national survey of underrepresented rare disease patients and caregivers to understand barriers in accessing and affording healthcare.
- Global GenescoreMulti-faceted partnership to accelerate and advance health equity for the rare disease community. Joint initiatives include the Know Your Family History initiative and the annual RARE Health Equity Forum.
- Black Women's Health Imperative (BWHI)coreRDDC was founded and is led by the Black Women's Health Imperative. BWHI is the parent organization that established the coalition to address racial disparities in rare disease communities.
- National Minority Quality Forum (NMQF)corePartner for the Annual NMQF Leadership Summit on Health Disparities, leading a 4-panel series focused on rare diseases.
- AmgengeneralPharmaceutical company partner supporting RDDC's mission and initiatives.
- NovartisgeneralPharmaceutical company partner supporting RDDC's mission and initiatives.
- VertexgeneralPharmaceutical company partner supporting RDDC's mission and initiatives.
- UCBgeneralPharmaceutical company partner supporting RDDC's mission and initiatives.
- SobigeneralPharmaceutical company partner supporting RDDC's mission and initiatives.
- GeneDxgeneralPartner providing genetic testing resources and expertise supporting the Breaking Barriers genetic testing initiative.
- The Aarskog FoundationgeneralPatient advocacy organization partner.
- ALS AssociationgeneralPatient advocacy organization partner.
- Epilepsy FoundationgeneralPatient advocacy organization partner.
- Global GenesgeneralLeading rare disease patient advocacy organization partner.
- NORD (National Organization for Rare Disorders)generalLeading rare disease advocacy organization partner.
- National Institutes of Health (NIH)generalGovernment research partner providing insights on rare disease data and supporting research initiatives.
- Sickle Cell Disease Association of AmericageneralPatient advocacy organization partner.
- Muscular Dystrophy AssociationgeneralPatient advocacy organization partner.
Scale indicators5 records
Recent moves8 records
Expansion highlights5 records
Rare Disease Diversity Coalition competitors and assessment
Company assessmentDirect peers
- National Organization for Rare Disorders (NORD): The leading US rare disease patient advocacy organization; RDDC partnered with NORD on the 2,800+ participant 'Inequities in the Rare Disease Community' national survey, making NORD the most directly comparable peer on mission, constituents, and policy advocacy.
- Global Genes: Rare disease advocacy organization that partnered with RDDC on the 'Know Your Family History' initiative and the RARE Health Equity Forum. Operates a similar coalition-and-resources model serving rare disease patients and families.
- National Minority Quality Forum (NMQF): RDDC partners with NMQF on the Annual Leadership Summit on Health Disparities. NMQF's health-equity, disparities-reduction mission and summit model closely mirror RDDC's operating approach.
- EveryLife Foundation for Rare Diseases: National rare disease advocacy nonprofit focused on policy and access; comparable to RDDC in mission, DC-based policy engagement, and reliance on coalition-driven advocacy for rare disease patients.
Emerging players
- ALS Association: Listed RDDC partner. Operates as a major disease-specific rare-disease advocacy and research organization with similar patient-support and policy functions.
- Muscular Dystrophy Association: Listed RDDC partner and large rare-disease advocacy nonprofit. Comparable in constituency (rare disease patients/families) and in offering research, advocacy, and patient services.
- Epilepsy Foundation: Listed RDDC partner organization. Comparable as a large patient advocacy nonprofit addressing a condition with significant disparities and rare-disease overlap.
- Sickle Cell Disease Association of America: Listed RDDC partner. Directly comparable in focusing on rare/genetic conditions disproportionately affecting communities of color — the same constituency RDDC prioritizes.
- Myasthenia Gravis Foundation of America (MGFA): Disease-specific advocacy partner of RDDC, co-developing the SDOH report on Myasthenia Gravis. MGFA represents the category of condition-specific patient advocacy orgs that increasingly partner with RDDC for equity work.
Broad incumbents
- Black Women's Health Imperative (BWHI): Parent organization and founder of RDDC. BWHI is a larger, established health-equity nonprofit with a broader women's-health remit, of which RDDC is the rare-disease-focused initiative.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat4 records
Key risks5 records
Key highlights7 records
Customer concentration
Rare Disease Diversity Coalition social profiles
Digital presenceRare Disease Diversity Coalition financial estimates
Financial estimateRevenue estimate
Valuation estimate
Rare Disease Diversity Coalition leadership team
Management profileNumber of profiles
Profiles1 record
Rare Disease Diversity Coalition funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Rare Disease Diversity Coalition M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Rare Disease Diversity Coalition
What does Rare Disease Diversity Coalition do?
Rare Disease Diversity Coalition is a nonprofit advocacy coalition that brings together patient organizations, healthcare professionals, researchers, policymakers, and biopharmaceutical companies to address health disparities affecting historically marginalized people living with rare diseases. It delivers its impact through education and awareness initiatives, original research and policy reports, a fellowship program, organizational DEI tools, and disease-specific patient/caregiver studies. The coalition operates under the fiscal sponsorship and leadership of the Black Women's Health Imperative.
Is Rare Disease Diversity Coalition a public or private company?
Rare Disease Diversity Coalition is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Rare Disease Diversity Coalition founded?
Rare Disease Diversity Coalition was founded in 2020. It employs 11 to 50 people.
Where is Rare Disease Diversity Coalition based?
Rare Disease Diversity Coalition is headquartered in Atlanta, United States, in the North America region.
Who are Rare Disease Diversity Coalition's main competitors?
Direct peers on record are National Organization for Rare Disorders (NORD), Global Genes, National Minority Quality Forum (NMQF) and EveryLife Foundation for Rare Diseases. Emerging players are ALS Association, Muscular Dystrophy Association, Epilepsy Foundation, Sickle Cell Disease Association of America and Myasthenia Gravis Foundation of America (MGFA). Black Women's Health Imperative (BWHI) is listed as a broad incumbent.
Does Rare Disease Diversity Coalition have an API?
No public API is recorded for Rare Disease Diversity Coalition.
What industry is Rare Disease Diversity Coalition in?
Rare Disease Diversity Coalition's product category is Healthcare Advocacy Services. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of BPAGACAL, Public Health & Health Equity Organizations. Its NAICS code is 6241 and its SIC code is 8300.