About Project RARE

A youth-led organization built on a simple belief: the people living with rare diseases should lead the conversation about their care.

Our Mission

No patient too rare to be heard.

Project RARE is a youth-led advocacy organization dedicated to amplifying the voices of children and families living with rare diseases. Through education, policy advocacy, and international partnership, we work to ensure that no patient is too rare to be heard.

Our Story

How it started

Project RARE was founded by Dalya Zemrani, who was diagnosed with a rare skin condition as a young child. Living with a rare disease taught her how deeply it touches every part of life: the long road to diagnosis, the missing answers that would give children and their families a sense of closure, the consequences of misdiagnosis, and the limited resources for treatment. It also taught her how often young patients are left out of the conversations that shape their own care. Those experiences are what drove her to advocacy.

She decided to change that. What began as one patient's advocacy grew into an organization connecting young advocates, patient families, doctors, and policymakers across the United States and Morocco.

Dalya Zemrani, founder of Project RARE, at RDLA Rare Disease Week advocacy in Washington, DC

Meet the Founder

Dalya Zemrani

Dalya Zemrani is a high school student in Washington, DC, the founder of Project RARE, and a rare disease patient herself. Her own diagnosis as a young child is what drives this work: she leads the iCAN KIDS DC chapter, participates annually in RDLA Hill Days on Capitol Hill, and serves with the EveryLife Foundation's young adult advocacy program. In Morocco, she organizes patient workshops, awareness campaigns, and medical supply drives for rare disease communities. Her long-term interest is advancing research on rare conditions in children — so the next child diagnosed receives a faster diagnosis, better answers, and access to a wider range of treatment options.

Our Values

What guides us

See what we're building.

Explore Our Work