A youth-led organization built on a simple belief: the people living with rare diseases should lead the conversation about their care.
Our Mission
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
Project RARE was founded by Dalya Zemrani, a student advocate in the Washington, DC area, who saw that rare disease patients — especially children — are often left out of the conversations that shape their care.
What began as volunteer advocacy grew into an organization connecting young advocates, patient families, and policymakers in the United States and Morocco.
Meet the Founder
Dalya Zemrani is a high school student in Washington, DC and the founder of Project RARE. 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. Her work spans the United States and Morocco, where she advocates for medical supply access and patient community support.
Our Values