NW Rare Disease Coalition
NW Rare Disease Coalition is a Seattle-based nonprofit that unites Pacific Northwest rare disease patients, caregivers, clinicians, researchers, biopharma, payers, and legislators through advocacy programs, an annual fair, and a bipartisan Washington State policy platform.
- Company typePrivate
- Founded2017
- HeadquartersSeattle, United States
- Headcount1–10
- GTM typeB2B and B2C
- OfferingServices
What NW Rare Disease Coalition does
NW Rare Disease Coalition is a Seattle-based nonprofit advocacy organization serving the Pacific Northwest rare disease community. Founded informally around 2020 from stakeholders that had gathered at the Seattle Rare Disease Fair since 2017, the coalition was established by Carolina Sommer (advocacy, Born A Hero Research Foundation), Max Brown (health policy, Desimone Consulting Group), and Joshua Henderson (industry perspective, Pulse Infoframe). It operates as a unified voice for rare disease patients, caregivers, clinicians, researchers, biopharma, payers, and Washington State legislators, with a stated mission of ending the diagnostic odyssey, improving access to care, and accelerating treatment development. Geographic focus is Washington State, with a multi-state pilot now in four states.
The coalition's portfolio is composed of programs and initiatives rather than commercial products. Flagship offerings include the Complex Care for Kids Pilot (a multi-state care coordination program with TFA Analytics and health plan/system partners), the annual Rare Disease Fair (since 2017, in partnership with Seattle Children's Research Institute), the Rare Disease 101 Video Education Project, a Mental Health Resources Program, the Family Impact Evidence Generation Project, the Washington State Rare Disease Survey, and a bipartisan policy platform covering the RDAC Bill, Rapid Whole Genome Sequencing Bill, and RUSP Parity Bill. There is no proprietary technology stack; the coalition leverages partner capabilities (e.g., TFA Analytics for value-based care facilitation, Pulse Infoframe for real-world data) and standard nonprofit infrastructure (EveryAction for newsletter/donations).
The organization is funded through donations, grants, and sponsorships, with Born A Hero Research Foundation serving as fiscal sponsor for the Complex Care for Kids Pilot. It has approximately 5 employees, no disclosed revenue figures, no venture or private equity funding, and no commercial pricing model. Revenue mechanics center on donor cultivation, sponsorship packages for the Complex Care pilot, and fiscal partnership with Born A Hero Research Foundation.
NW Rare Disease Coalition firmographics
Firmographics- Name
- NW Rare Disease Coalition
- Legal name
- NW Rare Disease Coalition
- Website
- https://nwrare.org
- Company type
- Private
- Founded year
- 2017
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- NW Rare Disease Coalition is a Seattle-based nonprofit that unites Pacific Northwest rare disease patients, caregivers, clinicians, researchers, biopharma, payers, and legislators through advocacy programs, an annual fair, and a bipartisan Washington State policy platform.
- Ownership category
- akta.pro rank
NW Rare Disease Coalition industry classification
Industry- Product category
- Rare Disease Advocacy and Policy Services
- NAICS
- Other Individual and Family Services (624190), Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990), Business Associations (813910)
- SIC
- Services-Membership Organizations (8600), Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industry
- Disease Registries (Cancer, Immunization, Rare Disease, etc.) (HLAJAJAE)
Keywords
Where NW Rare Disease Coalition is headquartered
LocationHeadquarters
- HQ city
- Seattle
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
NW Rare Disease Coalition business model
Business model- GTM type
- B2B and B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D
Revenue model
- Donations and Sponsorship: The coalition accepts donations through online platforms and by check. They partner with Born A Hero Research Foundation as fiscal sponsor for certain programs. They also offer sponsorship opportunities for the Complex Care for Kids Pilot program.
Go-to-market motion1 record
Distribution channels2 records
Marketing channels6 records
NW Rare Disease Coalition product offering
Product offeringCore offering
NW Rare Disease Coalition is a nonprofit advocacy organization that supports the Pacific Northwest rare disease community through programming, education, and a bipartisan policy platform. It unites patients, caregivers, clinicians, researchers, industry partners, payers, and legislators around three focus areas: ending the diagnostic odyssey, improving access to care, and accelerating treatment development. Key offerings include the Complex Care for Kids Pilot, the annual Rare Disease Fair, the Rare Disease 101 video education series, mental health resources, the Washington State Rare Disease Survey, and policy initiatives such as the RDAC Bill, Rapid Whole Genome Sequencing Bill, and RUSP Parity Bill.
Product overview
NW Rare Disease Coalition is a nonprofit advocacy organization, not a technology product company. Its offerings consist of programs and initiatives focused on three strategic areas: ending the diagnostic odyssey, improving access to care, and accelerating treatment development. The portfolio includes the Complex Care for Kids Pilot (care coordination program), Rare Disease Fair (annual event since 2017), Rare Disease 101 Video Education Project, Mental Health Resources Program, Family Impact Evidence Generation Project, Washington State Rare Disease Survey, and Policy Initiatives including RDAC Bill, Rapid Whole Genome Sequencing Bill, and RUSP Parity Bill.
Differentiator
Problem solved
Functional benefit
Brands
- Rare Disease Fair: Annual rare disease fair (est. 2017) that aims to educate, engage, and inspire the community about rare disease research. Now part of the NW Rare Disease Coalition. Partnerships with organizations in other states are being formed to bring the Fair to other locations.
Products and services
- Complex Care for Kids Pilot A multi-state pilot program developed with TFA Analytics to deliver care coordination for children living with complex rare diseases across four states, working with participating health plans, health systems, and pediatric complex care coalitions.
- Rare Disease Fair Annual event hosted in partnership with Seattle Children's Research Institute aimed at educating, engaging, and inspiring the community about rare disease research and accelerated treatments.
- Rare Disease 101 Video Education Project
Quantifiable outcome
- Multi-state pilot program for complex care coordination serving children with complex rare diseases
- +3 more outcomes
Companies that use NW Rare Disease Coalition
Customer profileSegments6 records
Ideal customer profiles6 records
NW Rare Disease Coalition technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
NW Rare Disease Coalition partnerships and signals
Strategic signalPartnerships
16 partnerships are on record, tiered core and minor.
- Born A Hero Research FoundationcoreBorn A Hero Research Foundation founded in 2016 as a small support group focused on Pfeiffer Syndrome, grew into a research foundation supporting 15 rare diseases. Founded the Seattle Rare Disease Fair and birthed the NW Rare Disease Coalition. Serves as fiscal sponsor for the Complex Care for Kids Pilot program.
- Seattle Children's Research InstitutecoreAnnual partnership for the Seattle Rare Disease Fair (now part of NW Rare Disease Coalition). The annual fair aims to educate, engage, and inspire the community about rare disease research.
- TFA AnalyticscorePartner on Complex Care for Kids Pilot program. TFA Analytics facilitates value-based arrangements between payors and providers and helps transition people with complex conditions to value-based care. Prior work includes Palliative Care in Heart Failure and Value of Supportive Cancer Care Pilot.
- Desimone Consulting GroupcoreMax Brown serves as Vice President of Public Affairs at Desimone Consulting Group and leads all health policy tasks for the coalition. The firm specializes in policy advocacy at the intersection of life science discovery, patient advocacy, and healthcare policy reform.
- Pulse InfoframecoreJoshua Henderson serves as Head of Rare Diseases at Pulse Infoframe, which provides real-world data solutions for patient advocacy groups and biopharma companies globally. Joshua brings industry perspective to the coalition.
- Springboard EnterprisesminorJoshua Henderson serves as advisor to Springboard Enterprises, the premier global network of women innovators transforming industries. He led life science and health technology programs for nearly 400 high-growth companies over 12 years.
- Rare Disease Innovations Institute (RDII)minorNational organization focused on educating, engaging and equipping the rare disease community through policy, tools and data. Listed as a national organization resource.
- EveryLife FoundationminorNational organization dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. Carolina Sommer is a member of the Rare Disease Access Working Group with EveryLife Foundation.
- NORD (National Organization for Rare Disorders)minorNational organization dedicated to improving the lives of individuals and families living with rare diseases. Listed as a national organization resource and podcast host (NORDpod).
- Global GenesminorNational organization that works to connect, empower and inspire the rare disease community. Listed as a national organization resource and hosts the RARECast podcast.
- Health Plans and Health Systems (Complex Care Pilot)coreParticipating sites include health plans, health systems, and pediatric complex care and caregiving coalitions across four states. Sites include children's hospitals serving varied children and disease types, with regions implementing standardized payment models.
- National Alliance on Mental Illness (NAMI) - WAminorState affiliate offering mental health support groups, trainings, workshops, advocacy and legislative work. Also offers support groups in Spanish.
- Center for Chronic IllnessminorOrganization promoting well-being and decreasing isolation for those impacted by ongoing health challenges through support and education. Offers free support groups and workshops, including groups for African Americans, Spanish speakers, LGBTQIA+, and specific rare diseases.
- Project Sunshine (TelePlay)minorNonprofit providing joy and play to children through video technologies. TelePlay program brings play and activities to children and families, free and open to any child whose caregivers feel it would be helpful.
- Washington State Health Care AuthorityminorThe Health Care Authority's Children and Youth Behavioral Health Work Group (CYBHWG) compiled resources for Washington. Coalition links to these resources.
- Angel Aid CaresminorOffers retreats and workshops for caregivers. Connects Mothers, teaches self-care tools, and provides non-judgmental listening.
Scale indicators5 records
Recent moves6 records
Expansion highlights12 records
NW Rare Disease Coalition competitors and assessment
Company assessmentDirect peers
- Global Genes: National rare disease advocacy organization connecting, empowering, and inspiring the community. Mirrors NW Rare Disease Coalition's community-building and resource-curation work; both produce podcasts (RARECast parallels NW Rare's mental health resource curation) and educational content for rare disease families.
- EveryLife Foundation for Rare Diseases: Science-driven public policy organization accelerating biotech innovation for rare disease treatments. Closely comparable to NW Rare Disease Coalition's policy advocacy orientation; Carolina Sommer serves on EveryLife's Rare Disease Access Working Group. Subjects both pursue bipartisan legislative influence.
- Rare Disease Innovations Institute (RDII): National organization focused on educating, engaging, and equipping the rare disease community through policy, tools, and data. Highly comparable to NW Rare Disease Coalition given the shared emphasis on data, policy, and community programs. Listed as a national partner resource.
Emerging players
- Born A Hero Research Foundation: Founding organization of the NW Rare Disease Coalition and its fiscal sponsor. Supports 15 rare diseases and gave birth to the Seattle Rare Disease Fair. Closely intertwined with NW Rare Disease Coalition through shared leadership (Carolina Sommer) and financial infrastructure.
- National Alliance for Caregiving: Nonprofit coalition addressing the needs of family caregivers across disease areas. Comparable to NW Rare Disease Coalition's caregiver and family support focus (mental health, caregiver retreats, family impact evidence) and its multi-state coalition-building approach. Non-disease-specific but shares the coalition model.
Regional players
- Canadian Organization for Rare Disorders (CORD): Canada's national network for organizations representing rare disease patients. Directly comparable to NW Rare Disease Coalition as a union of patient organizations, clinicians, and industry pursuing national-level policy reform; serves as a useful analog for how a regional coalition can mature into a national advocacy platform.
- Rare Voices Australia: Australia's national rare disease advocacy organization acting as the unified voice for the Australian rare disease community. Functionally analogous to NW Rare Disease Coalition's mission to unify regional rare disease stakeholders around a single policy and program agenda.
Broad incumbents
- EURORDIS - Rare Diseases Europe: European umbrella rare disease patient advocacy organization. Comparable structurally to NW Rare Disease Coalition as a policy- and coalition-driven advocacy body, but with cross-national European policy reach; offers a model for how a regional voice can aggregate into supranational influence.
- National Organization for Rare Disorders (NORD): National umbrella rare disease advocacy organization. Directly comparable to NW Rare Disease Coalition in mission (advocacy, policy, patient support) but operates at a national scale with a much larger team, budget, and policy footprint. Listed as a partner resource by NW Rare Disease Coalition.
Others
- Pulse Infoframe: Real-world data company for rare disease patient advocacy groups and biopharma. Comparable through co-founder Joshua Henderson's role and the coalition's Family Impact Evidence Generation Project; represents the kind of data infrastructure partner NW Rare Disease Coalition works with rather than competes against.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights7 records
Customer concentration
NW Rare Disease Coalition social profiles
Digital presenceNW Rare Disease Coalition financial estimates
Financial estimateRevenue estimate
Valuation estimate
NW Rare Disease Coalition leadership team
Management profileNumber of profiles
Profiles3 records
NW Rare Disease Coalition funding detail
Funding detailFunding overview
Funding rounds
Investors
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NW Rare Disease Coalition M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about NW Rare Disease Coalition
What does NW Rare Disease Coalition do?
NW Rare Disease Coalition is a nonprofit advocacy organization that supports the Pacific Northwest rare disease community through programming, education, and a bipartisan policy platform. It unites patients, caregivers, clinicians, researchers, industry partners, payers, and legislators around three focus areas: ending the diagnostic odyssey, improving access to care, and accelerating treatment development. Key offerings include the Complex Care for Kids Pilot, the annual Rare Disease Fair, the Rare Disease 101 video education series, mental health resources, the Washington State Rare Disease Survey, and policy initiatives such as the RDAC Bill, Rapid Whole Genome Sequencing Bill, and RUSP Parity Bill.
Is NW Rare Disease Coalition a public or private company?
NW Rare Disease Coalition is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was NW Rare Disease Coalition founded?
NW Rare Disease Coalition was founded in 2017. It employs 1 to 10 people.
Where is NW Rare Disease Coalition based?
NW Rare Disease Coalition is headquartered in Seattle, United States, in the North America region.
How does NW Rare Disease Coalition make money?
One revenue line is on record: donations and Sponsorship.
Who are NW Rare Disease Coalition's main competitors?
Direct peers on record are Global Genes, EveryLife Foundation for Rare Diseases and Rare Disease Innovations Institute (RDII). Emerging players are Born A Hero Research Foundation and National Alliance for Caregiving. Regional players are Canadian Organization for Rare Disorders (CORD) and Rare Voices Australia. Broad incumbents are EURORDIS - Rare Diseases Europe and National Organization for Rare Disorders (NORD). Pulse Infoframe is listed as an others.
Does NW Rare Disease Coalition have an API?
No public API is recorded for NW Rare Disease Coalition.
What industry is NW Rare Disease Coalition in?
NW Rare Disease Coalition's product category is Rare Disease Advocacy and Policy Services. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of HLAJAJAE, Disease Registries (Cancer, Immunization, Rare Disease, etc.). Its NAICS code is 624190 and its SIC code is 8600.