Long Covid Families is a disabled-led non profit. We are committed to providing information, support, and resources to the patient and caregiver community. Your support is greatly appreciated.
Support Our Cause
Early recognition of post-viral illness leads to better outcomes for patients. We provide education to the public about symptom management, syndromes associated with post infectious illness, and the latest research and study opportunities. Long Covid Families is the only Long COVID advocacy group in the U.S. that centers children living with Long COVID. Collectively, our Board has over 50 years of experience of post-viral disability – including the lived experience of being disabled as a child with ME/CFS*, parenting with ME/CFS, first wave Long Hauler, and being a caregiver of a child with post-infectious illness. We center the patient experience in our legislative advocacy, in the media, and in our collaborations with the NIH and the Yale LISTEN Study. Everything we do is grounded in the ideal of patient led, patient heard, patient believed. “Nothing about us without us” is a call to action for advocates, decision makers, and the medical community.
*most people with Long COVID meet the criteria for an ME/CFS diagnosis. In post-infectious illnesses, syndromes like ME/CFS are common.
The work:
- Connecting patients to the information they need to understand how their bodies work with Long COVID.
- Removing medical gatekeeping of information. We connect the patient community with vital medical and health knowledge, giving them agency and shifting the power dynamic to the patient. Access to information should not be at the discretion of a doctor or the medical establishment.
- Focus on the unique ways children communicate their symptoms, giving caregivers tools to identify patterns and signs earlier.
- Ongoing education about Long Covid and associated syndromes
- Information on symptom management
- Guides on patient advocacy in schools, in the workplace, and within the healthcare system
- Comprehensive and ongoing database of research on Long Covid and associated syndromes
- The latest from the NIH Pediatric RECOVER Study and the Yale LISTEN Study
- Tips for navigating everyday life
- Insights on the specific challenges associated with infection-triggered chronic illness
Your contributions support the essential tools necessary to collaborate with partner organizations, create content, and maintain our website. We hope to launch new programs for the patient and caregiver community in 2023.
Nothing about us without us.
-Michael Masutha and William Rowland of Disabled People South Africa, 1993
Financials
Long Covid Families, Inc. is classified as a public charity under section 501(c) (3) of the Internal Revenue Code. Effective December 8, 2021, contributions made to Long Covid Families, Inc are deductible under section 170 of the Code. Please contact your tax preparer for information regarding your specific tax situation. The IRS determination letter can be located on their website.
Who We Are
Long Covid Families is a patient led, volunteer based, nonprofit organization.
We help caregivers, children, and individuals who have been impacted by long-term complications from COVID-19 infection: Reconnect to themselves. Reconnect to their families. Reconnect to the community.
