RareGen Announces 5th Annual Membership Summit in Washington, D.C.

Founders Khartik Uppalapati and Adan Eftekhari, who have lead RareGens policy mission for over 4 years.

Summit will bring members together to review five years of rare disease advocacy, policy engagement, and international work

WASHINGTON D.C., DC, UNITED STATES, August 28, 2026 /EINPresswire.com/ -- RareGen announced that it will host its 5th Annual Membership Summit in Washington, D.C., bringing members and organizational leaders together to review the organization’s work over the past five years and discuss its next phase of rare disease, disability, and health equity advocacy.

The summit will serve as both an annual membership gathering and a retrospective on RareGen’s policy work across state legislatures, federal agencies, international regulatory institutions, and United Nations human rights mechanisms.

Since 2019, RareGen co-founder Khartik Uppalapati has testified before state health equity task forces and legislative committees more than 17 times across Maryland, Virginia, Washington, D.C., and West Virginia. In many of those proceedings, he represented perspectives from BIPOC rare disease communities that have historically had limited representation in state-level health policy discussions.

RareGen’s state advocacy has coincided with the passage of 15 resolutions and efforts supporting the establishment of rare disease advisory boards across 23 U.S. states. Uppalapati has also held individual meetings with 14 state senators, including discussions concerning biosimilar and generic-drug subsidies intended to reduce cost barriers for rare disease patients from underserved communities.

At the federal level, RareGen has participated in legislative and regulatory processes concerning disability and healthcare access.

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

Eftekhari also filed a formal public comment with the U.S. Department of Labor’s Wage and Hour Division during rulemaking on the proposed phaseout of subminimum wages for workers with disabilities. The submission addressed the economic implications of the transition and its relationship to disability-rights frameworks.

RareGen’s work has increasingly extended beyond the United States.

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

Eftekhari served as primary author on 10 verified regulatory consultation responses submitted through the European Commission’s official Have Your Say portal on behalf of RareGen. The submissions addressed areas including health technology assessment, medical-device regulation, the Digital Services Act, chemical pollutant limits, and European life-sciences and biotechnology policy.

RareGen has also participated in United Nations human-rights review mechanisms.

Eftekhari co-authored four formal UN human-rights stakeholder and shadow reports concerning Saudi Arabia, Pakistan, Türkiye, and Egypt. The submissions were prepared for processes involving the Committee on the Elimination of Racial Discrimination, the Human Rights Committee, the Universal Periodic Review, and the Committee on Migrant Workers.

These reports addressed subjects including racial discrimination, civil and political rights, disability rights, migrant protections, and access to healthcare.

RareGen has also participated in consultations concerning government-supported healthcare frameworks designed to expand access for ethnic and racial minority populations internationally.

RareGen’s upcoming 5th Annual Membership Summit will provide members with an opportunity to review this body of work, assess the organization’s current policy priorities, and discuss future initiatives in rare disease advocacy, health equity, disability policy, and healthcare access.

“The fifth annual summit gives us an opportunity to look at what RareGen has built over the past several years and determine where that work should go next,” said Adan Eftekhari. “Our focus remains on sustained participation in the policy processes that directly affect rare disease and disability communities.”

Khartik Uppalapati
RareGen Youth Network
+1 703-453-7409
email us here