The Fair and Summit aim to educate, engage, and inspire our community about the importance of rare disease research. Our goal is for all attendees to understand how they can support accelerated research in rare diseases. We want to unite all stakeholders involved in rare disease research. We are pursuing ways to understand, analyze, and respond to the needs of the rare disease community with the hopes to improve the quality of life for patients.

The Seattle Rare Disease Fair is now part of the NW Rare Disease Coalition (www.nwrare.org) that lives under Born a Hero. Thanks to the Fair, we have been pursuing a pilot study with some national partners and have gather a diverse representation of patients from all over the state of WA. As part of the pilot study, we are hosting regional roundtable discussions that help us gather the data we need to continue to best address the needs of the community. This helps us prioritize our programs, projects, and to direct our advocacy efforts.