Community Resources

Actionable next steps beyond the data. National organizations, peer support, clinical guidance, and financial assistance for patients and families affected by infection-associated chronic conditions.

National Organizations

10 organizations

Trusted national organizations providing advocacy, research funding, clinical guidelines, and patient support for tickborne and post-infectious conditions.

LymeDisease.org

Advocacy

Leading Lyme disease advocacy organization focused on patient-centered policy initiatives, legislative reform, and evidence-based education for patients and families.

Visit lymedisease.org1-530-622-2755

International Lyme and Associated Diseases Society (ILADS)

Research

Nonprofit medical society dedicated to advancing the standard of care for Lyme and associated diseases through clinical guidelines, physician training, and peer-reviewed research.

Visit ilads.org

Global Lyme Alliance

Research

Leading private funder of Lyme disease research. Supports diagnostics improvement, treatment innovation, awareness campaigns, and patient education programs.

Visit globallymealliance.org1-203-969-1333

Bay Area Lyme Foundation

Research

Funds cutting-edge Lyme disease research with focus on improving diagnostics and developing new treatments. Provides free educational materials and tick testing programs.

Visit bayarealyme.org

CDC Tick-Borne Disease Program

Government

Federal surveillance, prevention resources, tick identification guides, and nationwide disease reporting data. Authoritative source for clinical and public health guidance.

Visit cdc.gov/ticks

Solve ME/CFS Initiative

Advocacy

Leading organization advocating for ME/CFS research funding, clinical trials, and patient support. Provides educational resources for patients, caregivers, and healthcare providers.

Visit solvecfs.org1-704-364-0016

Dysautonomia International

Support

Nonprofit focused on POTS and other forms of dysautonomia. Provides physician directories, patient support resources, research funding, and awareness initiatives.

Visit dysautonomiainternational.org

#MEAction

Advocacy

Global patient advocacy network for ME/CFS. Drives policy initiatives, supports grassroots patient organizing, funds research, and fights for recognition of infection-associated illness.

Visit meaction.net

Long COVID Alliance

Research

Coalition of patient-advocates, scientists, and disease experts working to advance cross-condition research coordination for Long COVID and related post-infectious conditions.

Visit longcovidalliance.org

Alpha-gal Syndrome Awareness

Support

Patient education and support community dedicated to Alpha-gal Syndrome (AGS) from tick bites. Provides dietary guidance, allergen resources, and physician education materials.

Visit alpha-gal.org

Support Groups & Peer Networks

Connecting with others who understand your experience can be one of the most powerful steps in managing a chronic condition.

Online Communities

Active patient communities exist on Reddit (r/Lyme, r/cfs, r/dysautonomia, r/LongCovid) and Facebook groups for each condition. These peer-led spaces provide daily support, shared experiences, and practical coping strategies. Search your condition name on any platform to find active groups.

Patient Mentoring Programs

Several national organizations offer one-on-one mentoring that pairs newly diagnosed patients with experienced advocates. LymeDisease.org and Solve ME/CFS Initiative both operate structured mentorship programs where veteran patients guide newly diagnosed individuals through treatment decisions and daily management.

Caregiver Support Resources

Caregivers of people with chronic infection-associated conditions face unique challenges. The National Alliance for Caregiving and condition-specific Facebook groups offer targeted support. Many state Lyme organizations host caregiver-specific support calls and provide burnout prevention resources.

State-by-State Support Group Directory

LymeDisease.org maintains a comprehensive directory of local Lyme support groups organized by state. Visit lymedisease.org and navigate to their support group finder to locate in-person and virtual meetings in your area. Many states also have independent tickborne disease alliances.

Clinical Resources for Providers

Evidence-based guidelines, diagnostic criteria, and continuing education opportunities for healthcare professionals treating infection-associated conditions.

ILADS Treatment Guidelines

Evidence-based clinical guidelines for the diagnosis and management of Lyme disease and associated conditions. Published in peer-reviewed journals and updated regularly. Available at ilads.org for healthcare providers.

CDC Diagnostic Criteria

Federal two-tier testing recommendations (ELISA followed by Western blot or equivalent), clinical case definitions, and surveillance criteria for Lyme disease and other nationally notifiable tickborne illnesses. Available at cdc.gov/lyme.

Continuing Medical Education (CME)

ILADS and Global Lyme Alliance offer accredited CME courses for physicians and nurse practitioners on tickborne disease diagnosis, treatment, and co-infection management. Annual ILADS Scientific Conference provides advanced training.

Emerging Research Conferences

Key conferences include the ILADS Annual Scientific Conference, Gordon Research Conference on Lyme Disease, NIH ME/CFS Conference, and the International Association for Chronic Fatigue Syndrome (IACFS/ME) biennial conference. These provide the latest clinical and research updates.

Emergency Resources

988 Suicide and Crisis Lifeline

Call or text 988, available 24/7. Free, confidential support for people in distress. Chronic illness significantly increases risk of depression and suicidal ideation -- you are not alone.

Emergency Symptoms Requiring Immediate Care

Seek emergency care for: facial palsy (Bell's palsy), heart palpitations with chest pain, severe headache with stiff neck (meningitis signs), sudden vision changes, difficulty breathing, fainting or seizures, or severe allergic reaction (anaphylaxis from Alpha-gal Syndrome).

When to Go to the ER vs. Urgent Care

ER: chest pain, difficulty breathing, facial drooping, severe allergic reaction, seizures, signs of meningitis, or any life-threatening symptom. Urgent care: new rash (including possible erythema migrans/bull's-eye rash), fever with joint pain, tick bite with embedded tick you cannot safely remove, or worsening symptoms not responding to current treatment.

Financial Assistance

Navigating the financial burden of chronic illness. Resources for insurance appeals, disability benefits, medication assistance, and cost reduction.

Patient Assistance Programs

LymeDisease.org maintains a list of financial assistance resources for patients. The HealthWell Foundation, Patient Access Network Foundation, and NeedyMeds provide copay assistance and medication grants for qualifying patients with chronic conditions.

Disability Application Resources

The Social Security Administration (SSA) processes SSDI and SSI claims for chronic Lyme disease, ME/CFS, POTS, and Long COVID. Visit ssa.gov or call 1-800-772-1213. Disability Rights Advocates and Allsup provide free guidance on navigating the application and appeals process.

Insurance Appeal Guidance

Patients frequently face insurance denials for extended antibiotic treatment or specialist visits. LymeDisease.org provides insurance appeal letter templates. Your state insurance commissioner can assist with disputes. The Patient Advocate Foundation offers free case management for insurance issues.

Pharmaceutical Patient Programs

Major pharmaceutical manufacturers offer patient assistance programs (PAPs) for qualifying uninsured or underinsured patients. RxAssist (rxassist.org) maintains a comprehensive database of manufacturer programs. GoodRx and Mark Cuban Cost Plus Drugs can reduce out-of-pocket medication costs.

Caregiver Support Hub

Burnout prevention, self-care strategies, and support resources for those caring for loved ones with invisible illnesses.

Workplace Accommodations Guide

ADA rights, reasonable accommodation requests, and condition-specific workplace solutions.

Disclaimer: This page provides informational resources only and does not constitute medical advice. Always consult a qualified healthcare provider for diagnosis and treatment decisions. Organization listings do not imply endorsement by InvisibleSignal.

Last updated: August 2026. If you are in crisis, call or text 988 for the Suicide and Crisis Lifeline (available 24/7).