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The Fair and Summit aim to educate, engage, and inspire our community about the importance of rare disease research, with the goal that everyone who attends will learn how they can support accelerated research in rare diseases.
- Friday, June 4: Learn from world famous gene therapy experts, scientists and leaders in the rare disease space about gaps they have identified in this community and listen to insightful scientific talks on orthopedic rare diseases. Born a Hero is working with other stakeholders to establish a NW Rare Disease Coalition that includes a Rare Disease Advisory Council (RDAC) in WA state. We invite you to learn about our progress and ideas we have for the future of the Coalition. We will host a Rare Disease Policy Roundtable with elected officials.
- Saturday, June 5: At the Summit, patients, families and advocates will get to know their local rare disease community, learn about what resources are available, and understand how to take action moving forward.