The Rare Disease Council of America connects patients, families, researchers, and policymakers to ensure no rare disease community is left behind.
Congressional & Agency Briefings
Countries in Our Network
Families Reached
Founded by Bhavya Uppalapati at age 12, RDCA is driven by personal experience and a commitment to ensuring rare disease communities have meaningful representation in health policy.
Delivering briefings to congressional offices, federal agencies, the WHO, and the World Bank to advance rare disease funding and legislation.
Connecting patient families, researchers, and policymakers across 20+ countries to create a unified voice for rare disease communities.
Mentoring young advocates and coordinating student chapter outreach to build the next generation of health policy leaders.
Authoring policy briefs, educational materials, and op-eds that amplify rare disease awareness and empower families navigating care.
From Capitol Hill to international forums, RDCA is driving real change for rare disease communities worldwide.
Briefings to Congress, federal agencies, WHO & World Bank
Countries connected through our global advocacy network
Families reached with resources for diagnosis & care access
Commitment to every rare disease patient and family
RDCA operates at the intersection of patient advocacy, health policy, and youth leadership.
Direct briefings and testimony to congressional offices advocating for increased rare disease research funding and equitable care access legislation.
Partnerships with the WHO, World Bank, and global health bodies to elevate rare disease priorities on the international stage.
A growing network of student-led chapters that bring rare disease advocacy into schools and communities across the country.
Publishing policy briefs and educational materials that inform decision-makers and empower families to navigate the rare disease landscape.
Young leaders dedicated to making a difference for rare disease communities.
Started RDCA at age 12, driven by personal family experience with rare disease. Leads policy advocacy and organizational strategy, dedicating 15–20 hours monthly to the mission.
Supports RDCA's strategic initiatives, coalition-building efforts, and organizational growth to expand the council's reach and impact.
Builds and nurtures partnerships with patient organizations, research institutions, and policy groups to strengthen RDCA's global network.
Join thousands of advocates, families, and researchers working to ensure every rare disease patient has a voice.