Rare Disease Diversity Coalition

Healthcare Advocacy Servicesrarediseasediversity.org

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

Rare disease advocacy
Health equity initiatives
Patient advocacy coalition
Genetic testing access
Diversity in clinical trials

Where Rare Disease Diversity Coalition is headquartered

Location

Headquarters

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 offering

Core 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 profile

Segments4 records

Ideal customer profiles3 records

Rare Disease Diversity Coalition technology and API

Technology

Technology 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 signal

Partnerships

19 partnerships are on record, tiered core and general.

Myasthenia Gravis Foundation of America (MGFA)coreStrategic or Co-development Partner · 1 January 2025Collaboration 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)coreStrategic or Co-development Partner · 13 October 2022Partnership to conduct the first-ever national survey of underrepresented rare disease patients and caregivers to understand barriers in accessing and affording healthcare.
Global GenescoreStrategic or Co-development Partner · 6 October 2022Multi-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)coreStrategic or Co-development Partner · 1 January 2020RDDC 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)coreStrategic or Co-development PartnerPartner for the Annual NMQF Leadership Summit on Health Disparities, leading a 4-panel series focused on rare diseases.
AmgengeneralOthersPharmaceutical company partner supporting RDDC's mission and initiatives.
NovartisgeneralOthersPharmaceutical company partner supporting RDDC's mission and initiatives.
VertexgeneralOthersPharmaceutical company partner supporting RDDC's mission and initiatives.
UCBgeneralOthersPharmaceutical company partner supporting RDDC's mission and initiatives.
SobigeneralOthersPharmaceutical company partner supporting RDDC's mission and initiatives.
GeneDxgeneralTechnology or IntegrationPartner providing genetic testing resources and expertise supporting the Breaking Barriers genetic testing initiative.
The Aarskog FoundationgeneralOthersPatient advocacy organization partner.
ALS AssociationgeneralOthersPatient advocacy organization partner.
Epilepsy FoundationgeneralOthersPatient advocacy organization partner.
Global GenesgeneralOthersLeading rare disease patient advocacy organization partner.
NORD (National Organization for Rare Disorders)generalOthersLeading rare disease advocacy organization partner.
National Institutes of Health (NIH)generalOthersGovernment research partner providing insights on rare disease data and supporting research initiatives.
Sickle Cell Disease Association of AmericageneralOthersPatient advocacy organization partner.
Muscular Dystrophy AssociationgeneralOthersPatient advocacy organization partner.

Scale indicators5 records

Recent moves8 records

Expansion highlights5 records

Rare Disease Diversity Coalition competitors and assessment

Company assessment

Direct 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 financial estimates

Financial estimate

Revenue estimate

Valuation estimate

Rare Disease Diversity Coalition leadership team

Management profile

Number of profiles

Profiles1 record

Rare Disease Diversity Coalition funding detail

Funding detail

Funding 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 investment

M&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?

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.