July 10, 2024 - Improving Care for Veterans with Rare Diseases:  Establishing a National Commission 

CPALs hosted this Congressional Hill Briefing, Improving Care for Veterans with Rare Diseases: Establishing a National Commission, at the U.S. Capitol Visitor Center in Washington, DC. This briefing was designed to bring together Veterans/Veterans' advocates, rare disease advocates, patients, and congressional staff to address unmet needs of Veterans with rare diseases and explore collective action to help ensure Veterans with rare diseases get the comprehensive, patient-centered care and treatment they need and deserve. CPALs has been dedicated to Veterans’ Health advocacy for many years through our PALs United for Veterans’ Health initiative, with a culmination of our work captured in Improving Care for Veterans with Rare Diseases: A Blueprint for Action. Our work continues as we dedicate ourselves to working collaboratively on next steps that build on this briefing. We are grateful to our speakers, supporters, and Advocate Advisor partners for helping to make this event possible!

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• Event Site

• Event Summary

• Recording

• Slides

• PALs United for Veterans' Health Blueprint for Action

• PALs United for Veterans' Health Blueprint for Action Summary Goals
   

December 8, 2022 - PALs United for Veterans' Health Roundtable: Collaborating on Issues Affecting Veterans with Rare Disease to Maximize Collective Impact

This invitation-only leaders Roundtable built on the work started at the PALs United for Veterans' Health Roundtable inaugural event that was held November 16, 2021, where the Center for Patient Advocacy Leaders (CPALs) convened veterans' advocates and health leaders to collaborate on ways to improve access to care for U.S. Veterans affected by rare diseases/conditions. This convening was designed as a working meeting, to further examine the recommendations from the previous meeting collectively and develop a plan of action (PALs United for Veterans' Health Blueprint for Action) on how this group can work together to initiate and execute on ways to promote education on the issues and improve access to care for Veterans with rare diseases/conditions.

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• PALs United for Veterans' Health Blueprint for Action

• PALs United for Veterans' Health Blueprint for Action Summary Goals

• Meeting Objectives and Agenda​

• Registered Attendees

• Roundtable Slides

• Event Recording​
   

November 16, 2021 - PALs United for Veterans' Health Roundtable: Addressing the Issues Affecting Veterans with Rare Diseases/Conditions

Invitation-only leaders Roundtable focused on addressing issues affecting Veterans with rare disease/conditions, focused on coalescing advocates and supporters from veteran service organizations, rare disease patient health advocacy groups and caregivers, to identify ways of working together to meet the access, diagnostic and treatment challenges specific to rare disease within the VA system.  In addition, this event aimed to connect the group of advocates to enable them to harness a collective voice to address access to care for Veterans affected by rare disease/conditions in the VA system, through education, policy and/or procedural change.

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• Event Site

• Meeting Objectives and Agenda​

• Speakers

  • Presentation: Overview of the Current Healthcare Landscape Relating to Rare Disease Care in the Veterans Community
    Jamie Sullivan - EveryLife Foundation​

• Graphic Recording/Visual of the Roundtable Event

• Proceedings Report

• Recording of the Event
   

• NEXT STEPS: Moving from Ideas to Action Special Report
   

• Resources Shared by Roundtable Attendees:

  • Alliance for Patient Access Rare Diseases Working Group

  • American Association of Kidney Patients Veterans Health Initiative

  • EveryLife Foundation for Rare Diseases

  • EveryLife Foundation Advocacy Tools

  • “ICER Partners with VA Office for Drug Coverage, Price Negotiations”

  • Journal of the American Board of Family Medicine “Health of Veteran’s Strengths & Challenges”

  • Rare Disease Congressional Caucus

  • The House Committee on Veterans’ Affairs

  • The Senate Committee on Veterans’ Affairs

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