We hope you can join us for the Seattle Rare Disease Fair Virtual Conference, 2021!
What: The Seattle Rare Disease event is an opportunity to bring all stakeholders involved in rare disease research together. With collaboration, we are stronger and can accelerate research and innovation. The Seattle Rare Disease Fair is an opportunity to educate, discuss, learn, create awareness, network, and take action.
When: Friday June 4th and Saturday June 5th, 2021
Agenda: Available on the About Us tab
Where: Virtual (Link will be sent out the day before event)
JUNE 4th– Fair
As Born a Hero works with other stakeholders to establish a rare disease council in WA state, we invite you to learn from world famous gene therapy experts, scientists and leaders in the rare disease space and to hear their ideas for the future of the WA RDAC. We encourage your input moving forward.
At the Rare Disease Policy Roundtable we will invite legislators and national policy rare disease influencers so that we can learn about what policies are important to the rare disease community. Here you can also provide input and learn about actions you can take.
We will also have speakers in the orthopedic rare disease world that you won’t want to miss. This year our scientific talks will pertain to Orthopedic Rare Diseases such as; Pfeiffer Syndrome, Klippel-Fiel Syndrome, Fibrodysplasia Ossificas Progressiva, Brittle Bone Disease, and Osteogenesis Imperfecta
JUNE 5th– Summit
This is an opportunity to learn about what resources are available for the rare disease community, and the day will be spent implementing actionable items moving forward.
Listen to some motivational speakers and register to win some prizes. We hope to have a “Fair” amount of fun!
Hosted By: BORN A HERO and Seattle Children’s Research Institute
