Rare Disease Day

This free event will bring together people with rare diseases, caregivers and families, medical professionals, researchers, advocates and students to share knowledge and experiences, while encouraging and supporting one another.

The theme for this year’s gathering is Family Odyssey: From Diagnosis to Research to Treatment.  Keynote speakers will discuss advances in genetic testing and treatment that have changed the rare disease landscape. Breakout sessions will provide opportunities for attendees to learn more about genetic testing, discover ways to support siblings of children with a rare diagnosis, learn strategies for coping with stress, connect with adults living with a rare disease, and explore rare disease-focused careers. The event will include lunch. In addition to hearing from keynote speakers and attending breakout sessions, participants will have the opportunity to engage with one another and visit information tables hosted by various advocacy and service organizations. 

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