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  • About Long COVID Week
    • Programming and Events
    • Meet the Organizers
    • Find More Events
    • FAQs
  • What Is Long COVID?
    • What is Long COVID?
    • Find Help for Long COVID
    • Boston Long COVID Clinics
    • Tips for Appointments
    • MassCPR Awareness Video
  • Schedule of Events
    • Daily Agendas
    • Speaker Bios
    • Saturday Meet Up
    • Zoom Link
    • Recordings of Sessions
  • Resources
    • Research Organizations
    • Long COVID Organizations
    • Advocacy
    • Caregiver Resources
    • Massachusetts Resources
    • Primary Care Resources
    • Weekly Newsletter
  • Contact Us
  • More
    • Home
    • About Long COVID Week
      • Programming and Events
      • Meet the Organizers
      • Find More Events
      • FAQs
    • What Is Long COVID?
      • What is Long COVID?
      • Find Help for Long COVID
      • Boston Long COVID Clinics
      • Tips for Appointments
      • MassCPR Awareness Video
    • Schedule of Events
      • Daily Agendas
      • Speaker Bios
      • Saturday Meet Up
      • Zoom Link
      • Recordings of Sessions
    • Resources
      • Research Organizations
      • Long COVID Organizations
      • Advocacy
      • Caregiver Resources
      • Massachusetts Resources
      • Primary Care Resources
      • Weekly Newsletter
    • Contact Us
  • Home
  • About Long COVID Week
    • Programming and Events
    • Meet the Organizers
    • Find More Events
    • FAQs
  • What Is Long COVID?
    • What is Long COVID?
    • Find Help for Long COVID
    • Boston Long COVID Clinics
    • Tips for Appointments
    • MassCPR Awareness Video
  • Schedule of Events
    • Daily Agendas
    • Speaker Bios
    • Saturday Meet Up
    • Zoom Link
    • Recordings of Sessions
  • Resources
    • Research Organizations
    • Long COVID Organizations
    • Advocacy
    • Caregiver Resources
    • Massachusetts Resources
    • Primary Care Resources
    • Weekly Newsletter
  • Contact Us

Long COVID Organizations

Bateman Horne Center

The Brain Inflammation Collaborative

Bateman Horne Center

BHC is a leading U.S. clinical and research center specializing in Long COVID, ME/CFS and fibromyalgia. The BHC offers expert patient care, education and evidence-based resources to improve understanding and develop treatments for complex immune conditions.

Link

Body Politic

The Brain Inflammation Collaborative

Bateman Horne Center

A pioneering patient-led organization that created one of the first Long COVID support groups, combining advocacy, community building and research to amplify patient voices and drive change in healthcare and policy.

Link

The Brain Inflammation Collaborative

The Brain Inflammation Collaborative

COVID-19 Long Hauler Advocacy Project (C19 LAP)

A nonprofit focused on conditions of brain inflammation—triggered by infections, autoimmune responses, allergies, or injuries. It supports research, education and advocacy to improve diagnosis and treatment.

link

COVID-19 Long Hauler Advocacy Project (C19 LAP)

COVID-19 Long Hauler Advocacy Project (C19 LAP)

COVID-19 Long Hauler Advocacy Project (C19 LAP)

A grassroots organization led by Long COVID patients that advocates for disability rights, workplace protections and health equity. Their focus is ensuring the voices of those affected are central to policy and research efforts. 

Link

Dysautonomia International

COVID-19 Long Hauler Advocacy Project (C19 LAP)

Dysautonomia International

A non-profit organization that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs.

Link

Long COVID Alliance

COVID-19 Long Hauler Advocacy Project (C19 LAP)

Dysautonomia International

A coalition of patient advocates, scientists and nonprofits working together to advance research, education and policy solutions for Long COVID and related post-viral illnesses. They focus on raising awareness and influencing decision-makers to accelerate progress in treatments and care.

Link

Long COVID Families

Massachusetts ME/CFS & FM Association (MassME)

Long COVID Families

A patient-led advocacy group focused on supporting families affected by Long COVID, with special attention to children and caregivers. They offer resources, community connection and policy advocacy to improve care and outcomes.

Link

Long COVID Justice

Massachusetts ME/CFS & FM Association (MassME)

Long COVID Families

A patient-led advocacy group dedicated to amplifying marginalized voices in the Long COVID community, advancing health justice and pushing for systemic change through activism, education and policy reform.

Link

Massachusetts ME/CFS & FM Association (MassME)

Massachusetts ME/CFS & FM Association (MassME)

Massachusetts ME/CFS & FM Association (MassME)

A strong and long-standing organization that can provide advocacy, symptom management handouts, webinars and support with a strong regional focus for Massachusetts residents.

 

Link

Pandemic Patients

Standing Up to POTS

Massachusetts ME/CFS & FM Association (MassME)

A national nonprofit organization providing legal and advocacy support to people impacted by COVID-19, including assistance with healthcare access, workplace protections, disability rights and navigating government programs.

 

Link

Solve M.E

Standing Up to POTS

Standing Up to POTS

Focused on research, advocacy and patient education for ME/CFS and Long COVID, including updates on clinical trials and treatments. 

Link

Standing Up to POTS

Standing Up to POTS

Standing Up to POTS

Their mission is to improve the quality of life for people living with postural orthostatic tachycardia syndrome (POTS) through research, advocacy and support.

Link

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