Events

Newborn Screening Bootcamp provides attendees with the opportunity to learn about and discuss developments in newborn screening.

Once a month RARE Advocates convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community.

Advocates residing in the states of Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont are welcome to register to attend the Virtual New England Rare Disease State Advocacy Event.

Ready to share your story and get involved in rare disease advocacy? Join a virtual How to Get Involved session for an overview of our programs, events, and advocacy opportunities.

Join the RARE Foundation run team at the New York City Marathon.

Ready to share your story and get involved in rare disease advocacy? Join a virtual How to Get Involved session for an overview of our programs, events, and advocacy opportunities.

This free, multi-day event, hosted by the RARE Foundation, brings together rare disease advocates from across the country to make their voices heard with their Members of Congress.