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 advocate for rare disease patients on Capitol Hill through RDLA Hill Days, and bring the cause into schools — organizing student meetings and awareness campaigns through the iCAN KIDS DC chapter.
We run workshops that bring rare disease patients and their families together with doctors, and lead awareness campaigns so no family has to navigate a rare diagnosis alone.
We raise funds to purchase and deliver essential medical supplies directly to rare disease communities in Morocco — turning donations into equipment in patients' hands.
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." Our founder is one of the zebras. We advocate for all of them.