RareGen to Mark Five Years of Advocacy at Annual Membership Summit in Washington, D.C.

Founders Khartik Uppalapati and Adan Eftekhari, who will be leading the upcoming summit.

Fifth annual gathering will highlight RareGen’s growth in rare disease policy, disability rights, health equity, and international advocacy

WASHINGTON D.C., VA, UNITED STATES, August 31, 2026 /EINPresswire.com/ -- RareGen will host its 5th Annual Membership Summit in Washington, D.C., bringing together members and organizational leaders to reflect on five years of advocacy and set priorities for the organization’s next phase of work in rare disease policy, disability rights, health equity, and healthcare access.

The annual summit will provide a forum for members to review RareGen’s expanding policy footprint, from testimony before state legislatures and engagement with federal agencies to regulatory submissions in Europe and participation in United Nations human-rights processes.

Over the past several years, RareGen has developed a policy-focused advocacy model centered on participation in the institutions and proceedings that shape healthcare and disability policy.

At the state level, RareGen 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 included issues affecting BIPOC rare disease communities and populations that have historically had limited representation in health policy discussions.

RareGen’s state-level engagement has coincided with the passage of 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 approaches to reducing patient costs through biosimilar and generic-drug subsidies.

The organization has expanded that work into federal policy and regulatory proceedings.

In November 2024, Adan Eftekhari, on behalf of RareGen, authored a proposed amendment to the Health Equity for Youth with Disabilities Act. The proposal outlined $250 million in annual authorized funding from 2025 through 2029 and included provisions addressing culturally competent care coordination and access to subsidized services for BIPOC youth with disabilities in rural and economically disadvantaged communities.

Eftekhari also submitted a formal public comment to the U.S. Department of Labor’s Wage and Hour Division concerning the proposed phaseout of subminimum wages for workers with disabilities. The submission examined the potential economic effects of the transition alongside broader disability-rights considerations.

RareGen’s international engagement has grown significantly as well.

Between 2022 and 2026, Eftekhari and Uppalapati co-authored and submitted more than 100 research and policy reports addressing healthcare, disability, regulatory policy, and human rights before international institutions.

As part of that work, Eftekhari served as primary author of 10 verified regulatory consultation responses submitted on RareGen’s behalf through the European Commission’s Have Your Say portal. The consultations covered health technology assessment, medical-device regulation, biotechnology and life-sciences policy, chemical pollutant standards, and the Digital Services Act.

RareGen has also contributed to United Nations human-rights review processes. Eftekhari co-authored four stakeholder and shadow reports concerning Saudi Arabia, Pakistan, Türkiye, and Egypt, addressing issues that included disability rights, racial discrimination, migrant protections, healthcare access, and civil and political rights.

The submissions were prepared for proceedings involving the UN Human Rights Committee, the Committee on the Elimination of Racial Discrimination, the Universal Periodic Review, and the Committee on Migrant Workers.

The 5th Annual Membership Summit will bring RareGen’s domestic and international work together as members assess progress, identify emerging policy priorities, and consider opportunities to strengthen the organization’s engagement with policymakers, regulators, and institutions.

“Reaching our fifth annual summit is an important opportunity to measure our progress and think carefully about what comes next,” said Adan Eftekhari. “RareGen has always believed that representation matters most when communities have a meaningful voice in the policy decisions that affect them. Our goal is to continue creating opportunities for rare disease and disability perspectives to be part of those conversations.”

The Washington gathering will also serve as a platform for RareGen members to discuss the organization’s future direction, with an emphasis on sustained policy participation, stronger representation of underserved communities, and continued engagement across U.S. and international institutions.

Khartik Uppalapati
RareGen Youth Network
+1 703-453-7409
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