On December 6, 2023, Director of Community Engagement Dorothea Lantz was the keynote and opening speaker for the first annual Rare Conversations. This rare disease policy forum was organized by Alexion AstraZeneca Rare Disease and focused on how to advance the needs of people living with rare disease and their caregivers by working with state and federal officials. Also in attendance for this important conversation surrounding rare disease was Annie Kennedy, Chief of Policy, Advocacy & Patient Engagement at EveryLife Foundation, Heidi Ross, Vice President of Policy and Regulatory affairs at the National Organization for Rare Disease, Representative Cathy McMorris Rodgers (R-WA), Jason Resendez, President and CEO at National Alliance for Caregiving, congressional staff and the U.S. Food and Drug administration.
Rare Conversations provided an opportunity to not only stimulate the knowledge of our community’s needs, but it also provided specific recommendations for policy change.
The week of December 11, 2023, Dorothea was invited to represent our organization and our PWS community at EveryLife Foundation’s Community Congress year-in-review in Washington, D.C. This annual, in-person event provided an opportunity for members to participate in a comprehensive review of 2023, and to establish our rare disease collective policy priorities for 2024.
The event was attended by patient advocacy organizations, policymakers’ industry, and governmental agencies. The agenda included presentations, panel discussions, table brainstorming sessions and group breakout sessions.
The Community Congress is dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together. The Congress acts as a coalition of collaborators with shared priorities, providing strategic guidance and insight on policy issues and Foundation programs. PWSA | USA is honored to represent the “voice” of our community and will continue to fight for PWS initiatives!