On March 15, 2024, Patient-Led Research Collaborative commemorates International Long COVID Awareness Day. On this day, we honor those with and affected by Long COVID globally. We collectively mourn those who lost their lives to Long COVID and COVID-19. Together, we raise awareness, foster community connectedness, and fight for our lives.
400+ million people estimated to have Long COVID worldwide.
1 in 15 adults in the US have Long COVID.
$3.7 trillion estimated economic cost of Long COVID in the US in the first 5 years of the pandemic due to loss of quality of life, reduced earnings, and increased medical expenses.
Less than 8% recover after 2 years.
Each COVID-19 reinfection adds to the risk of developing Long COVID.
No FDA-approved treatments for Long COVID exist.
Patient-Led Research Collaborative (PLRC) continues to vigorously work towards improving the lives of people with Long COVID and infection-associated chronic conditions as the COVID-19 pandemic continues to spread worldwide.
PLRC conducts research and advocates for policies that enable patients -- particularly the most marginalized -- to survive and thrive. Our team is at the table with senior decision makers in government, healthcare, and industry worldwide as we unify the patient bloc to fight for better treatment and care. We believe putting patients in the driver’s seat hastens the discovery and dissemination of effective and efficient global healthcare solutions.
Highlights of Our Work
Our work behind the scenes with policymakers including WHO, US Congress, the White House, NIH, CDC, HHS, AHRQ, and FDA
Our 2023 Long COVID review, co-authored with Drs. Eric Topol and Julia Moore Vogel, has received 1.3 million downloads and is #59 of all 25.3 million papers across all fields, and #2 of all Nature Reviews Microbiology papers
Our call for a $1 billion moonshot for Long COVID research per year for the next decade, co-authored with Dr. Michael Peluso
Our open letter to President Biden, signed by over 1000 researchers, clinicians, organizations, patients, and allies, calling for him to prioritize Long COVID in his FY25 budget request
Our Patient-Led Research Fund granted $5+ million to 10 research projects, including the first monoclonal antibodies clinical trial for Long COVID and the first discovery of amyloid-containing deposits in skeletal muscle associated with post-exertional malaise (PEM)
Our work with the US FDA and NIH on their CURE ID tool, together with key partners like #MEAction, Solve ME, and Dysautonomia International
Our Patient-Led Research Scorecards to improve meaningful engagement of patients in research, together with the Council of Medical Specialty Societies
Our work building and helping lead coalitions like the Long COVID Alliance and the Infection-Associated Chronic Conditions Patient Advocacy Coalition, which just released its first paper
Our research which first characterized the 200+ Long COVID symptoms (2020), ranked among the top four most cited Long COVID research papers ever published
We have long ways to go and we can achieve more with your help.
Thank you for considering supporting PLRC and taking action with our partners’ below!
In solidarity,
Team PLRC
Calls to action from some of our mighty partners working on Long COVID and other infection-associated chronic conditions:
Call your US congressional representatives with Long COVID Moonshot
Take CURE ID’s treatment survey for Long COVID patients, care partners, and healthcare providers
Raise awareness about Long COVID with The COVID-19 Longhauler Advocacy Project’s Long COVID Awareness Day Toolkit
Memorialize those lost to the COVID-19 pandemic with Marked By COVID
Join #MEAction in their national campaign to educate hospital systems and medical schools about ME/CFS during their #MillionsMissing week
Join Solve ME’s Advocacy Week, hosted virtually April 15-19, 2024!
And don’t miss The Sick Times, a new independent news site dedicated to Long COVID and the COVID-19 pandemic!
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