Project RARE is a youth-led advocacy organization amplifying the voices of children and families living with rare diseases — in Washington, DC, in Morocco, and beyond.
See Our WorkWhat We Do
We participate annually in Rare Disease Legislative Advocates (RDLA) Hill Days, meeting with congressional offices to advance legislation on rare disease research, diagnosis, and access to treatment.
Through iCAN KIDS chapters in Washington, DC and Morocco, we give young patients and advocates a seat at the table in pediatric medicine and research.
We advocate for access to essential medical supplies for rare disease patients in Morocco, working with local partners to connect needs with resources.
Why Rare Diseases
More than 7,000 rare diseases affect an estimated 300 million people worldwide — and half of them are children. Yet roughly 95% of rare diseases still have no approved treatment.
The rare disease community's symbol is the zebra — from the medical school saying, "when you hear hoofbeats, think horses, not zebras." We advocate for the zebras.