Advocacy

As part of our mission, we advocate for patient-led and patient-involved research as well as policies that enable patients, particularly the most marginalized, to access care and live with dignity. Our advocacy spans many areas – from advocating to ensure Long COVID research is methodologically sound and reflective of the patient experience to advocating for disability benefit reform.

Below we list our key previous and ongoing forms of advocacy, as well as related publications and documents. For questions or to collaborate, please email team@patientledresearch.com or Lisa McCorkell at lisa@patientledresearch.com.

Definitions, Outcomes, and Guidelines

Disability Policy

ICD Codes

Medical Care

Medical Education

  • PLRC regularly presents primers on Long COVID and associated conditions, with talks at Harvard, OHSU, and dozens of others

Patient Engagement

  • In May 2024, PLRC submitted a comment to the US Office of Management and Budget in regards to public participation and community engagement with the federal government.

Prevalence

Research

RECOVER Initiative
FDA

United States Congress and White House

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