Join the Celebration: Rare Disease Awareness Month

Join the Celebration: Rare Disease Awareness Month

The Simons Searchlight team is thrilled to stand alongside our dedicated community of participants, families, caregivers, patient advocacy groups, researchers, and medical providers worldwide in celebrating Rare Disease Day in February. Observed annually on February 28, or 29 in leap years, Rare Disease Day coincides with the rarest day of the year. In honor of this milestone, we are hosting a month-long series of activities designed to expand visibility, knowledge, and support for rare genetic neurodevelopmental disorders.

Our friends at the National Organization for Rare Disorders (NORD) describe the annual event as a “globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.” Learn more

Discover what webinars we’ve lined up to recognize this global awareness initiative all month long, all designed to amplify our collective efforts.

A Message from Wendy Chung, Simons Searchlight Principal Investigator

Wendy Chung, M.D., Ph.D., is happy to observe Rare Disease Awareness Month alongside our incredible community. Watch the full video below to learn more about her long-term commitment as the principal investigator of Simons Searchlight.