Rare Disease Fair
About the program

Sustainable solutions require everyone at the same table.

Rare disease families shouldn't have to live in the right state to be seen. Our events put every part of a state's rare disease ecosystem in one room — patient advocates, patient organizations, researchers, clinicians, genetic counselors, industry, government institutions, payers, and legislators — to end the diagnostic odyssey, improve access to care, and accelerate new treatments.

Three ways a state shows up

The events

Rare Disease Fair THE CORE

A full day of panels, keynotes, breakout sessions, and community tables that puts a state's entire rare disease ecosystem in one room — with action-oriented discussions around the diagnostic odyssey, genetic testing, and gene therapy.

Every state · the flagship event
Sample sessions from past fairs
  • The Road to Diagnosis — patient panels on the diagnostic odyssey
  • How whole genome sequencing, biomarkers, and newborn screening work together to transform care
  • Genetic testing in rare disease: finding the needle in the haystack
  • Understanding state boards and Rare Disease Advisory Councils
  • State and federal policy panels — with legislators and advocacy leaders
  • Protecting the pipeline: Medicaid, NIH, and the research infrastructure
  • Next-gen care: AI's role in rare disease
  • The Undiagnosed Disease Network — an inside look
  • From guidance to growth: transitioning from pediatric to adult care
  • Partners in care: elevating social work in rare disease journeys
  • The power of exercise as medicine · accessibility in the community
  • Interactive roundtables, kids-as-advocates sessions, and a resource fair of community booths
Drawn from real sessions across past fairs; each state's agenda is built fresh with local speakers.

Payer Forum

A payer-centered convening that brings health insurers, clinicians, researchers, biotech leaders, and patient advocates together for open, constructive conversation about rare disease care.

Seattle · North Carolina
Sample sessions from past forums
  • Beyond the numbers: the human impact behind rare disease coverage decisions
  • Unpacking the diagnostic odyssey: how states and medical policy can support families earlier and better
  • From diagnosis to access: using claims data to support coverage of high-cost therapies
  • Keynote panel — Politicians can't agree, but can clinicians?
  • Evidence-based payer guidelines for rare disease management
  • Whole genome sequencing and the future of coverage
  • Insurance alignment: collaborating on access to medically necessary genetic testing
  • Naming the unnamed: how medical coding brings visibility to the undiagnosed
  • The new era of rare disease treatment: cell and gene therapy access for patients, providers, and payers
  • A patient's journey through case management — with payer representatives at the table
  • State Medicaid deep-dives with health care authority leadership
  • Roundtable working sessions turning discussion into shared action
Drawn from real sessions across past forums; each state's agenda is built fresh with local payers and clinicians.

Research Day

A day connecting researchers with the community to accelerate the science — launched alongside the Colorado fair in 2026.

Colorado
Sample sessions from past research days
  • Whole genome sequencing: the transition from diagnostic tool to screening tool
  • CAR T cells for childhood-onset lupus (SLE)
  • Prenatal intervention for rare diseases: early diagnosis and early intervention
  • The next frontier of neurology is in utero
  • Lysosomal storage disorders through the lens of Fabry
  • Gene therapy education overview
  • Rett syndrome and neurodevelopmental disease research — expert panel
  • Repurposing drugs: how patient advocacy organizations are leading the way
  • Navigating clinical trials: a patient perspective
  • Partnership across patients, industry, and academia
  • Parent groups changing the course of treatment
  • The power of exercise as medicine
Drawn from real sessions; research days pair local investigators with the community they serve.
How we got here

From one fair to a movement

2017

The first Rare Disease Fair — Seattle

The NW Rare Disease Coalition hosts the first fair in Seattle, bringing the Pacific Northwest's rare disease community into one room for the first time.

2018–2024

The model proves out

Annual Seattle fairs grow year over year, adding Payer Forums and community picnics — and showing that when a state's whole ecosystem convenes, real collaboration follows.

2025–2026

The fair travels

Colorado becomes the first fair beyond the Northwest, followed by Oklahoma — proving the model works in any state that's ready to show up. Research Days join the lineup.

2026

The Rare Disease Alliance is born

To take the fairs national, the team behind them forms the Rare Disease Alliance — a national 501(c)(3) that pilots programs, generates evidence, builds statewide coalitions, and advances state policy so breakthroughs in one state spread to all of them.

2027 and beyond

Six states strong. Forty-four to go.

Texas, North Carolina, and California host inaugural events while Seattle celebrates its 10th annual fair. We won't stop until every state convenes for its rare disease families.

There's a place for you in this movement.

Whether you're a rare disease family, a clinician, a researcher, an industry partner, a payer, or a policymaker — we'd love to hear from you.

Get in touch About the Alliance