Government Resources
These organizations have reliable information and support for people who have Long COVID:
- Administration for Community Living compilation of resources for people experiencing Long COVID, including disability support
- Agency for Healthcare Research and Quality (AHRQ) Long COVID Network
- National Library of Medicine’s LitCOVID resource, a collection of scientific research and up-to-date scientific information about COVID-19
- US Centers for Disease Control and Prevention information on long-term effects of COVID-19
Long COVID Support Groups and Care Networks
If you need more support, medical care, connection, or ways to take action, these groups can offer help:
- Bateman Horne Center
- Offers groups and classes for Long COVID and other similar diseases
- Black COVID Survivors
- Supports the recovery and empowerment of Black, Indigenous, and People of Color (BIPOC) patients and survivors whose lives have been impacted by Long COVID
- Brain Inflammation Collaborative
- Provides an online platform for child and adult patients with inflammatory brain diseases, like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), to share their stories, symptoms, life events, and biospecimens; researchers use this information to better understand problems that involve swelling in the brain or nervous system, also called neuroinflammatory diseases
- Dysautonomia International
- Provides support groups and easy-to-understand information on postural orthostatic tachycardia syndrome (POTS) and other types of dysautonomia associated with Long COVID; these health problems affect things the body does automatically, like breathing and heart rate
- Long COVID Alliance
- A group of patient advocates, scientists, disease experts, and drug developers working to teach policy makers about Long COVID
- Long COVID Families
- Helps children and families affected by diseases that spread from one person to another
- Long COVID Kids
- Represents and supports children and young people living with Long COVID and similar diseases
- Longhauler Advocacy Project
- Supports people with Long COVID and their families through advocacy, education, and research
- Marked by COVID
- A movement that works for fairness and stronger policies to honor and remember those lost in the pandemic
- Mask Together America
- Shares ways to prevent COVID and advocates for people who had COVID, lost loved ones to COVID, and currently have Long COVID
- Patient-led Research Collaborative
- A group of Long COVID patients and people with similar diseases, like ME/CFS and POTS, who also do research
- Solve M.E.
- Works to improve care and research for Long COVID and similar conditions like ME/CFS