The Everylife Foundation for Rare Diseases (ELF) held their annual Community Congress meeting on December 11, 2025 at the National Press Club in Washington, DC.   The Community Congress acts as a coalition of collaborators with shared priorities, providing strategic guidance and insight on policy issues and initiatives pertinent to the rare disease community. It comprises four permanent working groups that meet at least quarterly to advance federal and state legislative and regulatory policy solutions. These working groups help set direction for the Everylife staff work throughout the year.

Workgroups

We heard about the stormy skies and sunny spots during a very tumultuous 2025.  The significant changes in policy, philosophy, and even personnel ushered in by the current administration created several challenges.  However, the rare community is naturally resilient and stepped up to find solutions.

Newborn Screening & Diagnostics Workgroup: Thirteen US States have now adopted the Recommended Uniform Screening Panel (RUSP) for newborns; covering roughly 52% of all newborns in the country.  The other states continue to operate as a patchwork of different screening panels.

Public Policy Workgroup: The headwinds have been strong for this group. Even so, the Give the Kids a Chance Act, which includes reauthorization of the very successful pediatric Priority Review Voucher (PRV) program, has passed the House and is now before the Senate.

Regulatory Workgroup: In the midst of all the turbulence at FDA, the Rare Disease Innovation Hub has been setting a strong foundation.  Their two RISE (Rare disease Innovations, Science, and Exploration) workshops in conjunction with the Duke-Margolis Institute for Health Policy have been very well received and more are planned for 2026.

Access and Value Workgroup: Commissioned a study on the utilization of Medicaid resources for rare disease patients across all the states.  While the data are still under review, some interesting insights have already emerged.

Value

The Society for Participatory Medicine (SPM) is a non-profit organization member of the Community Congress.  This membership is mutually beneficial.  Active participation in the Everylife Foundation events, including Rare Disease Day on Capitol Hill and the Community Congress, raises the awareness of SPM and participatory medicine in general.  The interactions with other member organizations also provide insights into other forces trying to shape healthcare.  The Community Congress benefits by allowing other members to tap into our philosophy, practices, and expertise.  Oftentimes, we are giving a name to something that these organizations, families, and patients are experiencing in their lives.

Call to Action

The Community Congress is participatory – the more we put in, the more we will get out.  As our membership renews in 2026, we want to use all the benefits membership brings.  Our current Membership level includes seats for two people to be part of one working group.  The working groups meet virtually, quarterly. Membership also includes registration to the Annual Meeting, access to the Community Congress portal (very similar to the SPM forums), weekly updates on pertinent issues, and the occasional issue driven workshop.

If you are interested in getting involved with the Everylife Community Congress as a representative of SPM, please reach out to me at kevin@salemoaks.com.

I thank the Society for Participatory Medicine for supporting my transportation and lodging that allowed me to attend the Community Congress Annual Meeting.