Inside the Seattle Rare Disease Fair: A Celebration of Community, Collaboration, and What We're Building Together

Movement building is slow and steady work. Each gathering, each email, each shared post, each webinar compounds quietly over time until one day you look up and realize: this is a multi-faceted, powerful, global movement pushing science forward to discover treatments and cures for the 10,000 (and counting) rare diseases that affect families around the world.

Last Thursday and Friday was one of those days. Our client the NW Rare Disease Coalition hosted their 9th annual Seattle Rare Disease Fair + Payer Forum, and the room was alive with possibility. Two full days of bringing together patients, families, clinicians, payers, researchers, and advocates to share ideas, form collaborations, and brainstorm the innovations that will transform healthcare for rare disease families.

“The air was electric with possibilities. We are seeing real advances in treatments, drug repurposing, and gene therapy, and the wider rare disease community has never been more connected or coordinated.”

What the Rare Disease Fair Is Built to Do

What sets the rare disease fair model apart is the intentional mix of voices in the room. Payers sit alongside patient families. Clinicians share panels with advocates who live the experience every day. Researchers connect with organizers who can help translate breakthroughs into community action. That breadth of perspective, all gathered with a shared sense of purpose, is where real collaboration begins.

One moment from this year’s forum stands out. Jill Hawkins of the FAM177A1 Research Fund, another client of ours, shared her personal experience of her daughter aging into adulthood and navigating the complex transition of care that comes with it. Her story brought depth and grounding to a panel of clinicians, and it was a beautiful reminder of what these fairs make possible: a space where lived experience and clinical expertise sit side by side, enriching each other.

What we love most about working in this space is that rare disease families simply do not take no for an answer. The determination is relentless, and it is contagious. It is an honor to help these organizations raise the funds that will, literally, change healthcare for the entire country.

A Model That Is Now Going National

The energy from Seattle is spreading. Through our partnership with the NW Rare Disease Coalition, we have been proud to help build and brand their new national organization: the Rare Disease Alliance, which is taking this high-impact fair model to states across the country.

This year, the Rare Disease Alliance is bringing rare disease fairs to Colorado, Oklahoma, and North Carolina. The model is built on a simple but powerful idea: surface local innovations, then cross-pollinate them to other states so that families everywhere benefit from what is being discovered and built in their own communities. What works in Seattle may be exactly what a family in Tulsa or Raleigh has been waiting for.

Why Rare Impact Agency Sponsors These Fairs

Rare Impact Agency is a proud sponsor of the rare disease fair series because we believe deeply in the entire rare disease ecosystem. Sponsoring these events is a natural extension of our mission. The fundraising strategies we build, the brands we help create, and the movements we help grow all draw energy from a community that is connected, informed, and inspired. Events like the Seattle Rare Disease Fair are where that inspiration is born.

If you are a rare disease organization looking for a partner who shows up, who understands the stakes, and who invests in the community alongside you, we would be honored to connect. This work is our commitment, and this community is our home.

“Together, we can build the future so many families are waiting for.”

FREE WEBINAR

Turn Community Passion into Fundraising Power

The P2P Playbook for Rare Disease Foundations

Friday, April 17th  |  9:00 AM PST / Noon EST  |  FREE  |  60 minutes

The Rare Impact Agency team will walk you through the two most powerful peer-to-peer fundraising campaigns rare disease foundations are running right now.

• Digital campaigns where supporters create personal fundraising pages and invite their networks to give and share. Often run for Awareness Days, Anniversaries, Rare Disease Day, and more.
• Event-based campaigns that pair the energy of a shared experience with community-driven giving. Think 5Ks, virtual walk/run/rolls, golf or pickleball tournaments, dance-a-thons, and more, held in neighborhoods all over the world with team captains rallying their personal networks.

We will show you exactly how these campaigns are structured, what fuels momentum at every stage, and how to set your community up for success before you ever hit launch. Bring your questions!

Save your spot here: https://us06web.zoom.us/meeting/register/F9ynhdceRFWJMgMLCsgalA

Know someone who would benefit? Please share this with anyone interested in free education on peer-to-peer fundraising.