PWSA | USA at the EveryLife Community Congress: Looking Back at 2025 and Mobilizing for 2026

Washington, DC | December 10–11, 2025

PWSA | USA recently participated in the EveryLife Foundation for Rare Diseases’ Community Congress end-of-year convening in Washington, DC. This two-day gathering brought together rare disease advocates, policy experts, and community leaders to reflect on state-level legislative progress in 2025, assess emerging challenges, and begin shaping a coordinated strategy for 2026.

Building Connections Across the Rare Disease Community

The convening began on Wednesday, December 10, with the Community Congress Networking Happy Hour at the Rare Hub Workspace. This informal setting provided an opportunity for advocates and partners from across the rare disease ecosystem to reconnect, build new relationships, and exchange insights on shared priorities. For PWSA | USA, these conversations are essential to strengthening cross-disease collaboration and ensuring that the needs of individuals and families living with Prader-Willi syndrome (PWS) remain part of broader policy discussions.

2025 Community Congress Annual Meeting

Thursday, December 11, 2025 | National Press Club

The Community Congress Annual Meeting reinforced the power of collective advocacy and highlighted both the progress made in 2025 and the urgency of the work ahead.

RDLA State Advocacy Session: Key Policy Themes

As part of the meeting, PWSA | USA participated in a Rare Disease Legislative Advocates (RDLA) state advocacy session focused on recent legislative developments and future priorities. Presentations included:

1. Looking Back at 2025 and Ahead Toward 2026
   Erin Fitzpatrick, Stateside Associates
   An overview of state-level legislative trends impacting rare disease communities, including areas of momentum and states to watch in the coming year.
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3. Medicaid Cuts and What H.R.1 Means for the Rare Disease Community
   Jamie Sullivan, EveryLife Foundation for Rare Diseases
   A sobering analysis of proposed Medicaid cuts and the implications of H.R.1, underscoring the potential risks to access, continuity of care, and long-term supports for people living with rare diseases, including PWS.
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5. Medical Debt Legislation at the State Level
   Lauren Edwards, Blood Cancers United
   A discussion of state-based efforts to address medical debt and the disproportionate burden faced by rare disease families.
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7. Biomarker Legislation at the State Level
   Hillary Gee Goeckner, American Cancer Society Cancer Action Network
   An update on emerging biomarker legislation and its importance for timely diagnosis, treatment access, and innovation across disease areas.

Elevating Access and Reimbursement Issues Through Roundtable Discussion

PWSA | USA also played an active leadership role by facilitating a roundtable discussion focused on access and reimbursement challenges. The conversation explored:

1. *Trends in access experienced by rare disease communities, including payer type differences, formulary restrictions, and utilization management barriers.
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3. *Whether and how organizations have historically engaged in access and reimbursement policy.
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5. *Strategies needed to protect access amid growing payer resistance to FDA approval decisions.
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7. *Resources and information required to strengthen advocacy engagement at the organizational level

As in prior years, facilitators served primarily as guides, allowing for organic and candid dialogue. Participants shared lived experiences, identified common challenges, and proposed concrete strategies to safeguard access to approved therapies and necessary supports. Notes from these discussions were collected by EveryLife staff and will inform Community Congress advocacy priorities in the year ahead.

From Reflection to Action: A Call to Reorganize for 2026

While the Community Congress highlighted meaningful progress in 2025, it also underscored the challenges that remain. Notably, the PPRV legislation did not advance in the Senate this week—an outcome that reinforces the need for renewed coordination, broader engagement, and sustained pressure in 2026.

For the PWS community, this moment is a clear call to action. Protecting Medicaid, addressing access barriers, advancing newborn screening and biomarker policies, and ensuring that rare disease voices are heard at the state and federal levels will require a reorganized and energized advocacy effort.

Our Call to Action

As we look toward 2026, PWSA | USA encourages:

1. Advocates and families to stay engaged, share their stories, and participate in state and national advocacy opportunities
2. Partners and policymakers to work collaboratively to protect access to care and support innovation
3. The broader rare disease community to recommit to coordinated action—learning from setbacks, refining strategies, and returning stronger.

A Message to the PWS Community:

“Advocacy is rarely a straight line. There are moments of progress, moments of pause, and moments—like this one—that call on us to reorganize and recommit. The PPRV setback is disappointing, but it does not diminish the urgency of our mission or the strength of our community. In 2026, we will take what we’ve learned, strengthen our partnerships, and continue showing up—because access, equity, and dignity for people living with PWS are always worth fighting for.”
Dorothea Lantz, Director of Community Engagement, PWSA | USA