RareGen to mark 5 years of advocacy at Washington summit

RareGen will hold its 5th Annual Membership Summit in Washington, D.C., to review five years of work on rare disease policy, disability rights, health equity and healthcare access. The meeting will also set priorities for the group’s next phase of advocacy across U.S. and international institutions.

Why it matters: - RareGen is using its fifth annual summit to show how a small advocacy group has built a policy presence across state, federal and international venues. - The Washington gathering comes as rare disease, disability rights and health equity debates continue to shape healthcare policy for underserved communities. - The summit is also a checkpoint for the organization’s next phase, with members expected to weigh where RareGen can have the most impact.

What happened: - RareGen will host its 5th Annual Membership Summit in Washington, D.C., on Aug. 31, 2026. - Members and organizational leaders will review five years of advocacy work and set priorities for the future. - The summit will focus on rare disease policy, disability rights, health equity and healthcare access.

The details: - RareGen has expanded its policy work through testimony before state legislatures, engagement with federal agencies, regulatory submissions in Europe and participation in United Nations human-rights processes. - Co-founder Khartik Uppalapati has testified more than 17 times since 2019 before legislative committees and health equity task forces in Maryland, Virginia, Washington, D.C. and West Virginia. - His testimony has addressed issues affecting BIPOC rare disease communities and groups historically underrepresented in health policy discussions. - RareGen’s state-level work has coincided with 15 resolutions and advocacy supporting rare disease advisory board initiatives across 23 states. - Uppalapati has also met individually with 14 state senators to discuss policy proposals, including biosimilar and generic-drug subsidies aimed at reducing patient costs. - In November 2024, Adan Eftekhari authored a proposed amendment to the Health Equity for Youth with Disabilities Act on behalf of RareGen. - The proposal called for $250 million in annual authorized funding from 2025 through 2029. - The amendment also included culturally competent care coordination and access to subsidized services for BIPOC youth with disabilities in rural and economically disadvantaged communities. - Eftekhari submitted a formal public comment to the U.S. Department of Labor’s Wage and Hour Division on the proposed phaseout of subminimum wages for workers with disabilities. - The submission examined the economic effects of the transition and disability-rights concerns. - Between 2022 and 2026, Eftekhari and Uppalapati co-authored and submitted more than 100 research and policy reports before international institutions. - Eftekhari served as primary author of 10 verified regulatory consultation responses submitted through the European Commission’s Have Your Say portal. - Those consultations covered health technology assessment, medical-device regulation, biotechnology and life-sciences policy, chemical pollutant standards and the Digital Services Act. - RareGen also contributed to UN human-rights review processes through four stakeholder and shadow reports on Saudi Arabia, Pakistan, Türkiye and Egypt. - Those reports addressed disability rights, racial discrimination, migrant protections, healthcare access and civil and political rights. - The submissions were prepared for the UN Human Rights Committee, the Committee on the Elimination of Racial Discrimination, the Universal Periodic Review and the Committee on Migrant Workers.

Between the lines: - RareGen’s approach has moved beyond traditional grassroots advocacy and into the formal policy venues where rules, funding and rights protections are shaped. - The mix of state, federal, European and UN filings suggests the organization is building a broad advocacy model that can influence multiple layers of decision-making. - The summit presentation appears designed to frame RareGen’s growth as both a track record and a case for deeper institutional engagement.

What’s next: - Members will assess progress, identify emerging policy priorities and consider how RareGen should deepen engagement with policymakers, regulators and institutions. - The organization plans to emphasize sustained policy participation, stronger representation of underserved communities and continued work across U.S. and international bodies. - Adan Eftekhari said the fifth summit is a chance to measure progress and determine what comes next for rare disease and disability advocacy.

The bottom line: - RareGen is turning its anniversary summit into a report card on five years of increasingly global advocacy, while signaling that its next phase will focus on sharper policy influence and broader representation.