Resources
On this page, we provide useful resources for patients, businesses, healthcare providers, insurers, scientists and others navigating the emerging evidence and complex impact of Long COVID.
While this list is not exhaustive, we strive to continue to update the community on resources as they become available.
You can click a button to jump to a specific section of this page, or one of the options below to go to that group’s unique page:
Clinical Resources
We are often contacted by Long COVID patients seeking medical care or inquiring about clinical studies. While we are not a clinical research program, one of our aims is to connect those impacted by Long COVID with the most appropriate resources and support systems. There are a growing number of organizations and clinical studies being established to assist long haulers and those who support them.
- Post-COVID Care Clinics Searcher: With the large influx of long haulers entering the medical system, some hospitals and medical groups have created specialized Post-COVID Care Clinics. These clinics aim to offer care for the broad range of problems a person with Long COVID might experience. Survivor Corps is a Long COVID advocacy group. Their website has a searchable-by-state map of Post-COVID Care Clinics across the United States.
- Centers for Disease Control – Long COVID Website: The CDC’s general public website on Long COVID.
- RECOVER: A research initiative from the National Institutes of Health (NIH), seeks to understand, prevent, and treat PASC (post-acute sequelae of SARS-CoV-2), including Long COVID. Link to volunteer for RECOVER studies.
- ClinicalTrials.gov: A NIH-maintained, searchable database of clinical trials. Results for Long COVID.
- World Health Organization (WHO): Searchable portal for the International Clinical Trials Registry Platform (ICTRP).
- Medifind: A list of currently recruiting clinical studies on Long COVID.
- You + ME Registry: An online clinical study of individuals committed to identifying a cure for Long COVID and other post-viral illnesses.
- Johns Hopkins COVID Long Study: A survey from the Johns Hopkins Bloomberg School of Public Health, which is conducting research about how the COVID-19 pandemic has impacted people’s lives, especially around COVID-19 symptoms and recovery.
- Patient-Led Research Collaborative Survey: A group of Long COVID patients who are also researchers, currently conducting surveys related to Long COVID.
Financial Resources
- Patient Advocate Foundation: Services include reducing financial burden, enrollment into appropriate insurance and social programs. Financial resources include Patient Advocate Foundation’s Co-Pay Relief Program: COVID-19 Fund.
- Help Hope Live: Financial assistance through crowd-funding (think gofundme).
- How ACL’s Disability and Aging Networks Can Help People with Long COVID: Provides general resources for Long COVID
- What Happens if You Can’t Work Due to Long COVID? (Experian): Article with some resources for those affected by Long Covid
General
Resources
- Long COVID FAQ: a downloadable pdf of our own FAQ. We have heard from some long haulers that it would be useful to have a document like this for their own reference, or to refer friends, family, and co-workers to if they have questions about their condition.
- COVID.gov’s Long COVID Resources: The United States government’s Long COVID page includes:
- President Biden’s Memorandum on Addressing the Long-Term Effects of COVID-19.
- A fact sheet on the Administration’s Long COVID response.
- A list of resources and toolkits related to Long COVID (from the HHS COVID-19 Public Education Campaign).
- The National Research Action Plan on Long COVID, which is the government–wide national research agenda focused on Long COVID.
- NYC Health + Hospitals: NYC H+H’s After Care: Resource Center for Long COVID website. Includes general information and an interactive survey to connect patients with resources.
- Post-Acute Sequelae of SARS-CoV-2 infection (PASC) Dashboard: The American Academy of Physical Medicine and Rehabilitation’s (AAPM&R) dashboard to estimate those affected including state and county level data and trends over time.
- World Health Organization – Post COVID Condition Video: Episode of the WHO’s “Science in 5” series on Long COVID.
- Americans with Disabilities Act and US Department of Health Human Services: Guidance on “Long COVID” as a Disability Under the ADA.
- American Lung Association: The ALA’s Long COVID page.
- National Health Service (UK) – Long term effects of coronavirus: The NHS’ website on Long COVID.
- Pandemic Patients: A patient advocacy organization focused on helping those with COVID-19 and Post-COVID conditions.
En Español
- Recuperación Post-COVID-19- San Diego County
- Atención de personas con afecciones posteriores al COVID-19- CDC
- COVID-19 (coronavirus): Efectos a largo plazo- Mayo Clinic
- Plan del COVID-19 del presidente Biden | La Casa Blanca (whitehouse.gov)
- Enfermedad por coronavirus (COVID-19): afección posterior a la COVID-19- World Health Organization
- Afecciones posteriores al COVID-19 en niños y adolescentes- Healthy Children
