Our programs connect young patients, families, and policymakers across two continents.
Program
Project RARE hosts the iCAN KIDS DC chapter and is establishing the iCAN KIDS Morocco chapter, part of the International Children's Advisory Network. These chapters give children and teens a platform to advise researchers, hospitals, and industry on pediatric medicine — ensuring young patients help shape the care designed for them.
Program
Each year, Project RARE joins the Rare Disease Legislative Advocates (RDLA) Virtual and In-Person Hill Days in Washington, DC. We meet directly with congressional offices to advocate for legislation supporting rare disease research funding, newborn screening, and treatment access.
Program
Millions of rare disease patients worldwide lack access to basic medical supplies. Project RARE works with partners in Morocco to identify patient needs and connect them with resources — from everyday medical equipment to disease-specific supplies.
Program
Through the EveryLife Foundation's young adult program, Project RARE contributes to national rare disease policy conversations and helps build the next generation of patient advocates.
In the Field