Monday, May 10, 2021

Seattle Rare Disease Fair and Summit June 4 & 5 *Agenda Inside*


Seattle's Rare Disease Fair and Summit is just around the corner.  Scheduled for Friday, June 4th and Saturday, June 5th, this two-day event hopes to educate and inspire clinicians, patients, and families. Medical professionals from Seattle Children's Hospital will share their knowledge and experiences with you virtually. Many thanks to Carolina Sommer of Born A Hero for coordinating this event and sharing this information with us. 

She says, "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. The finalized agenda is available below. We are so excited!"  

"We have 50 amazing speakers, great roundtables, legislators and lots of resources and actions to take. There will also be door prizes including, gift cards, and 'Be Kind' hats."

To learn more and register (it's FREE) visit, or go directly to the registration page here.

On Friday, June 4, you can look forward to learning more about how Born a Hero works with other stakeholders to establish the Northwest Rare Disease Coalition that includes the Rare Disease Advisory Council (RDAC) in Washington state. Carolina says, "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 Coalition. We will host a Rare Disease Policy Roundtable with elected officials. Finally, we will feature insightful scientific talks on orthopedic rare diseases."

And that is just day one of this two-day event. 

On Saturday, June 5th, the focus is on community and advocacy. "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," states Carolina. 

Review the agenda below, or go to to learn more and save your spot! 

Born A Hero and our friends in the Pacific Northwest look forward to seeing you there. 

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