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Our Mission

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Our mission at COVID-19 Longhauler Advocacy Project is to advance the understanding of Long COVID and its associated conditions, and expedite solutions and assistance to Longhaulers and their families through advocacy, education, research, and support.
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Our Work

The COVID-19 Longhauler Advocacy Project (C19LAP) is a grassroots, patient-led, all volunteer 501(c)(3) nonprofit organization. We began in June of 2020 as a single facebook group which has grown to over 60 chapters covering each U.S. state and territory and community chapters such as Pediatrics & Pregnancy, Teens, BIPOC, LGBTQIA+, Caregivers, Labor Force Union, Research, Bereavement, and more.

Our three major focuses are on:

  1. Awareness and education for the public, patients, clinicians, researchers, government, and other relevant stakeholders,

  2. Development of resources through bi-directional communication with relevant stakeholders and Long COVID community engagement, and

  3. Advancement of patient-centered care coordination and research.

Group of People with Masks

Resources & Support

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Communities:
C19LAP Chapters & Socials
The C19LAP Comprehensive Guide to Long COVID
(V1- 2021) (V2- 2024)
C19LAP Comprehensive Long COVID Care Centers List (2022- present)
C19LAP COVID “Competent” Providers List (2022-present)

Awareness, Education & Research

image of a laptop on a wooden table with a zoom meeting ont he screen; a teal ceramic mug is to the left of the laptop
Communities:
C19LAP Chapters & Socials
The C19LAP Comprehensive Guide to Long COVID
(V1- 2021) (V2- 2024 coming soon)
C19LAP Comprehensive Long COVID Care Centers List (2022- present)
C19LAP COVID “Competent” Providers List (2022-present)

2020

  • First C19LAP community surveys in 2020; The first confirmed case only Longhauler survey (1700 responses), Confirmed and Unconfirmed Longhauler survey (700 responses), Experiences and needs of Longhaulers survey (1,200 responses)

  • PSA: Long COVID (2020)

2021

2022

  • First research reporting on the costs of, and level of disability, in Long COVID and calls for a National Long COVID Task Force. Open Letter to National Leadership, Calculations. (2022). Cited in Harvard Economist, David Cutler’s work published in JAMA on the Costs of Long COVID. 

  • PSA: Pediatric Long COVID (2022)

  • RoadMap to Successful Outcomes (2022)

  • Roundtable with Congresswoman Ayanna Pressley (2022)

2023

  • Webinar: Discussing the Biden-Harris Administrations Reports on Long COVID, Long COVID Legislation, and the Importance of community engagement. (2023)

  • C19LAP Patient-Developed Long COVID Model of Care, also referred to within the AHRQ Draft Report on Long COVID Models of Care (2023)

2024

Policy & Public Statements

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Coalition Building & Projects

2020-present - Ongoing dialogue with the Long COVID community, and those impacted by Infection-Associated Chronic Conditions. Government and health officials, and other stakeholders.

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Long Covid Alliance logo

Co-Founded the Long COVID Alliance (2021) The Long COVID Alliance is a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of Infection-Associated Chronic Conditions. Project leadership can be found here.

Members of the Disability Economic Justice Collaborative (2022) DEJC is a first-of-its-kind initiative bringing together more than forty leading disability rights and justice organizations, Washington, D.C. based think tanks, advocacy organizations, and top research and policy organizations committed to finally achieving economic security and justice for people with disabilities in the United States.

Disability Economic Justice Collaborative logo

Infection Initiated Chronic Conditions Understanding and Engagement (ICUE) program (2024) Through the Infection Initiated Chronic Conditions Understanding and Engagement (ICUE) program, the CDC Foundation, in partnership with the Centers for Disease Control and Prevention (CDC), are bringing together patient advocacy groups and community-based organizations focused on raising awareness and helping people living with IACCs to identify common priorities and opportunities to collaborate, including exploring the development of an IACC Patient Advocacy Coalition (IACCPAC).

CDC Foundation logo

In the Media

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Image by Utsav Srestha
Image by Utsav Srestha
The Sick Times logo
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