SAVE THE DATE – Friday, June 4th and Saturday, June 5th, 2021
Join Born a Hero Research Foundation and Seattle Children’s Research Institute for this year’s virtual Seattle Rare Disease Fair on June 4, and the Rare Disease Summit on June 5. The Fair and Summit aim to educate, engage, and inspire our community about the importance of rare disease research, with the hopes that everyone who comes knows how they can support accelerated research in rare diseases.
Friday, June 4: As Born a Hero works with other stakeholders to establish a Rare Disease Advisory Council (RDAC) in WA state, we invite you to learn from world famous gene therapy experts, scientists and leaders in the rare disease space about what ideas we have for the future of the WA RDAC. We will host a Rare Disease Policy Roundtable with elected officials. Finally, we will feature insightful scientific talks on orthopedic rare diseases.
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.
Additional information will be shared in April, including the detailed agenda and final speaker list. Please share this information with your friends and colleagues. Contact Carolina Sommer at email@example.com with any questions. We hope to see you there!