Support Group Directory

One of the largest online communities for Lyme disease patients, offering peer forums, evidence-based resources, and a patient-centered advocacy platform. Their MyLymeData research project allows patients to contribute to Lyme disease research while connecting with others on similar treatment journeys.

A leading nonprofit accelerating research and advocating for patients with ME/CFS. Their support programs include educational webinars, patient registries, and connections to clinical trials. They also maintain a comprehensive provider directory for patients seeking knowledgeable clinicians.

Provides education, support, and advocacy for fibromyalgia patients. Their programs include online support communities, educational materials for patients and providers, and awareness campaigns aimed at reducing the stigma around fibromyalgia and improving diagnostic timelines.

An international Slack community founded by Long COVID patients in 2020, now encompassing thousands of members across dozens of channels organized by symptom, treatment, and life stage. Body Politic was instrumental in early Long COVID research and continues to drive patient-led science.

The leading advocacy organization for POTS and other forms of dysautonomia. They fund research, host an annual conference, maintain a physician directory, and operate online support communities. Their local chapter network connects patients for in-person meetups and mutual aid.

A thriving Facebook community of over 30,000 members sharing practical advice on navigating life with alpha-gal syndrome -- from identifying hidden mammalian ingredients in medications and cosmetics to finding safe restaurants and managing cross-contamination risks.

Focused on pediatric Lyme disease, LivLyme provides educational resources for parents, funds research grants for Lyme disease diagnostics, and connects families with experienced pediatric Lyme specialists. Founded by a young Lyme patient, the organization brings a youth-centered perspective to advocacy.

A research-focused nonprofit based in California that funds cutting-edge Lyme disease research and provides patient support services. Their community programs include educational seminars, provider referrals, and peer mentorship for newly diagnosed patients in the Bay Area and beyond.

A global network of ME/CFS patient advocates organized into local chapters that coordinate community events, provider education, and political advocacy. Their campaigns have successfully pushed for increased NIH research funding and greater recognition of ME/CFS as a serious neuroimmune disease.

A nonprofit clinical and research center in Salt Lake City specializing in ME/CFS, fibromyalgia, and related conditions. They offer patient support groups, provider training programs, and telehealth consultations. Their research focuses on biomarkers and evidence-based treatment protocols.

An international charity supporting POTS patients with information, peer support, and advocacy. They produce patient guides, host online support meetings, and maintain a directory of POTS-aware clinicians. Their resources are valuable for patients worldwide, not just those in the United Kingdom.

A vibrant online community for people with chronic illness, disability, and neurodivergence. Originating on social media, #NEISVoid (No End In Sight Void) provides peer support, validates lived experiences, and combats the isolation that accompanies chronic invisible conditions through daily connection and mutual encouragement.

A cross-condition organization that advocates for people living with invisible disabilities including chronic pain, fatigue conditions, autoimmune disorders, and mental health conditions. They provide educational resources, employer toolkits, and a supportive community that bridges multiple diagnostic categories.

A digital health community and story-sharing platform where people with chronic illnesses, disabilities, and mental health conditions share first-person narratives. With millions of monthly readers, The Mighty amplifies patient voices and creates connection through radical vulnerability and shared experience.

An intersectional advocacy organization that centers the experiences of chronically ill people who are also marginalized by race, gender, sexuality, disability, or socioeconomic status. They produce research, policy briefs, and community education aimed at making chronic illness support more equitable and inclusive.