RareGen sets 5th annual summit for Washington, D.C.

RareGen will hold its 5th Annual Membership Summit in Washington, D.C., on Aug. 28, 2026, to review five years of rare disease, disability and health equity advocacy. The meeting will also frame the organization's next phase of policy work in the U.S. and abroad.

Why it matters: - RareGen is using its annual summit to measure five years of policy work across state, federal and international venues. - The meeting signals where the organization wants to focus next: rare disease advocacy, disability policy, health equity and access to care. - The summit also centers communities that RareGen says have been underrepresented in health policy, including BIPOC rare disease patients and disabled people.

What happened: - RareGen announced its 5th Annual Membership Summit in Washington, D.C., on Aug. 28, 2026. - The summit will bring members and organizational leaders together for a review of RareGen’s advocacy and policy engagement over the past five years. - The event will also serve as a membership gathering and a retrospective on work across state legislatures, federal agencies, international regulatory institutions and United Nations human rights mechanisms.

The details: - Since 2019, RareGen co-founder Khartik Uppalapati has testified more than 17 times before state health equity task forces and legislative committees in Maryland, Virginia, Washington, D.C. and West Virginia. - Those appearances often carried perspectives from BIPOC rare disease communities that have historically had limited representation in state health policy discussions. - RareGen’s state advocacy has coincided with 15 resolutions and efforts supporting rare disease advisory boards across 23 U.S. states. - Uppalapati has also met individually with 14 state senators, including on biosimilar and generic-drug subsidies aimed at reducing cost barriers for rare disease patients from underserved communities. - At the federal level, RareGen has taken part in legislative and regulatory processes tied to disability and healthcare access. - 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 per year in authorized funding from 2025 through 2029. - The amendment also outlined four program 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 comment addressed the economic impact of the transition and its connection to disability-rights frameworks. - Between 2022 and 2026, Eftekhari and Uppalapati co-authored and submitted more than 100 formal research and policy reports to international institutions. - Eftekhari served as primary author on 10 verified regulatory consultation responses submitted through the European Commission’s Have Your Say portal on behalf of RareGen. - Those responses covered health technology assessment, medical-device regulation, the Digital Services Act, chemical pollutant limits, and European life-sciences and biotechnology policy. - RareGen also participated in United Nations human-rights review mechanisms. - Eftekhari co-authored four UN human-rights stakeholder and shadow reports focused on Saudi Arabia, Pakistan, Türkiye and Egypt. - The reports were prepared for proceedings involving the Committee on the Elimination of Racial Discrimination, the Human Rights Committee, the Universal Periodic Review and the Committee on Migrant Workers. - The submissions addressed racial discrimination, civil and political rights, disability rights, migrant protections and access to healthcare. - RareGen has also taken part in consultations on government-supported healthcare frameworks intended to expand access for ethnic and racial minority populations internationally.

Between the lines: - The summit is as much a milestone event as a strategy session, letting RareGen package its record of advocacy into a narrative of growth and broader reach. - RareGen’s work shows a shift from local and state-level testimony to a wider portfolio that includes federal rulemaking, European regulatory comments and UN review processes. - The organization is also tying policy advocacy to equity arguments, especially around race, disability, geography and income.

What's next: - RareGen members will review the organization’s current policy priorities at the summit and discuss future initiatives. - The next phase is expected to keep RareGen active in rare disease advocacy, health equity, disability policy and healthcare access. - Adan Eftekhari said the summit will help determine where RareGen’s work should go next and reinforce sustained participation in policy processes affecting rare disease and disability communities.