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November 2025

  • Writer: longhauleradvocacy
    longhauleradvocacy
  • 1 day ago
  • 2 min read
"Logo for COVID-19 Longhauler Advocacy Project with a teal ribbon and text 'November 2025 Newsletter' on a white background."

Dear community,

 

We’re closing out November with urgency, momentum, and a renewed commitment to the tens of millions still living with Long COVID. This month’s newsletter brings critical updates from our work in Washington, D.C., major research developments, powerful new educational resources, community stories, and ways you can take action now.

 

Read our newsletter here. 

 

At APHA 2025, the largest public health conference in the country, C19LAP presented three official sessions and reached thousands of clinicians, researchers, and public health leaders. We emphasized the need for coordinated Long COVID strategy, distributed over 1,000 N95s, and advanced partnerships that will support national policy, education, and clinical guidance in 2026.

 

We continued our advocacy across the nation’s capital, bringing the Long COVID crisis directly to HHS, Congress, and the White House. The dismantling of nearly all federal Long COVID programs has stalled progress and worsened outcomes for millions. With federal action shrinking, our fully patient-led organization is stepping into the vacuum, building the education, policy frameworks, state networks, and coordination that should exist nationally.

 

This month’s issue provides a comprehensive overview of C19LAP’s ongoing national efforts, key developments in Long COVID research and policy, and new tools designed to support public health partners, clinicians, community advocates, and people living with Long COVID.

 

Inside, you’ll find:

  • A new Long COVID Public Health Resources Page, offering centralized, evidence-based guidance for agencies, institutions, and cross-sector partners

  • Our National Public Health Response Guide for Cross-Sector Stakeholders, outlining a coordinated, patient-centered framework for prevention, education, care, and policy

  • Community spotlight stories from Matthew, Mindy, Jobi, and Chris, highlighting lived experiences and advocacy across the country

  • Research and clinical updates on viral persistence, EBV, bone marrow reservoirs, autoimmune disease, cancer risk, and emerging therapeutics including GLP-1s, CAR-T, CRISPR, monoclonal antibodies, ensitrelvir, Anktiva, and multi-drug combination trials

  • Volunteer opportunities, national calls to action, and preparations for March 2026 Long COVID Awareness Day

 

There are many meaningful ways to support and amplify this work. You can:

  • Help elevate Long COVID education by sharing our resources with clinicians, public health partners, workplaces, and community organizations

  • Connect your local or state health department with C19LAP to strengthen coordination, awareness, and strategic planning

  • Volunteer with our national or state teams to support advocacy, public education, community outreach, operations, and upcoming awareness events

  • Participate in calls to action, including contacting elected officials and agencies to advance Long COVID policy and ensure patient-led leadership is included in decision-making

  • Share your story or uplift the stories of others to increase visibility, awareness, and public understanding

  • Engage with C19LAP on social media, helping expand our reach and counteract misinformation

  • Encourage institutions, networks, and coalitions you are part of to formally include C19LAP in relevant working groups, advisory bodies, collaborations, or initiatives that impact the Long COVID community

     

Together, these efforts help strengthen national momentum, expand public understanding, and build the coordinated Long COVID response millions urgently need.

 

With strength, resilience, and determination,

The COVID-19 Longhauler Advocacy Project

Board of Directors




 
 
 
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