Our programs connect young patients, families, and policymakers across two continents.
Program
Project RARE raises funds to purchase essential medical supplies and deliver them directly to rare disease communities in Morocco. Every campaign has a concrete target — specific equipment, for specific patients, with results we report back to our donors.
Program
Working with patient organizations in Morocco, we organize workshops that bring rare disease patients and their families face-to-face with doctors — creating space for medical questions, guidance, and community. Alongside the workshops, we lead public awareness campaigns about rare diseases.
Program
Each year, Project RARE joins the Rare Disease Legislative Advocates (RDLA) Hill Days in Washington, DC, meeting directly with congressional offices to advocate for rare disease research funding, diagnosis, and treatment access.
Program
Through the iCAN KIDS DC chapter, we organize student meetings and school awareness campaigns — building a generation of classmates who understand what living with a rare disease means, and giving young patients a voice in pediatric medicine.
Focus Area
Founded by a patient diagnosed as a young child, Project RARE has a special commitment to children and teens living with rare conditions — advocating for their inclusion in research and care decisions, and for advancing research on rare conditions in young patients.
In the Field