We hope you can join us for the Seattle Rare Disease Fair Virtual Conference, 2022! What: The Fair and Summit aim to educate, engage, and inspire our community about the…

MARCH 2, 2022 Use the links below to access the recordings DAY ONE DAY TWO Life with a rare disease can have infinite milestones, setbacks, traumas and triumphs—all likely to…

Collaborating to Make Mental Health in Rare Disease Stigma-Free Brought to you by: Jump to the Agenda for Each Day: Monday, February 28 | Tuesday, March 1  Register Now Syneos Health® Recognizes Rare Disease…

A Two-Day Golf Experience for Champions for a Cure Tournament Join us at the legendary Pinehurst No. 2 Golf Course to support children with rare genetic diseases. A Two-Day Golf…

More than one million North Carolinian patients are affected by a rare disease. Tara Britt, our founder, argues that removing IP protections from medical innovation will lead to less cures…

Topic Self - Care for Rare Disease parents #Rare #bonnellfoundation Description Let’s gather and unwind together. The pandemic has increased the stress families in the Rare Disease community are experiencing.Please…

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…