Lyme Disease Support Groups and Organizations

Quick answer

Lyme disease support groups and organizations can offer information, research updates and the comfort of talking with people who understand. National groups such as Global Lyme Alliance, Bay Area Lyme Foundation and LymeDisease.org are active as of October 2026. Choose groups that support working with your medical provider and never pressure you to buy anything.

Disclosure: Listing is not an endorsement; Beat Lyme has no financial relationship with these organizations. We checked each website in October 2026 to confirm it is active. Organizations change, so please check details on their own sites.

Why connect with others

Lyme disease can feel isolating, especially if recovery is slow or people around you do not understand what you are going through. According to Mayo Clinic, support groups can help people feel less alone, talk openly about their feelings, learn coping skills and hear about practical resources. Groups are different from therapy, though, and they should never replace your medical team.

National Lyme disease organizations

These are nonprofit organizations, listed in alphabetical order. Some take a mainstream medical view, and some are patient advocacy groups that disagree with parts of official guidance, such as on chronic Lyme disease. We describe each one using its own words, paraphrased.

A note on the Lyme Disease Association

The Lyme Disease Association (LDA), a long-running national group, announced on its website that it closed on December 5, 2024. You may still see it named in older articles and lists. We do not list it as an active organization.

University research centers

These academic centers study Lyme disease, including lingering symptoms. They are good places to learn about research and studies you may be able to join.

• Johns Hopkins Lyme Disease Research Center: runs patient-focused studies on all forms of Lyme disease, including post-treatment Lyme disease, and aims to turn findings into better care.
• Columbia University Lyme and Tick-Borne Diseases Research Center: brings clinicians and scientists together to improve care and recovery, with a focus on precision medicine.

For an overview of what researchers are working on, see Lyme disease research: what’s new.

Government sources

Government health agencies do not run support groups, but they are the best place for official facts.

• CDC (Centers for Disease Control and Prevention): symptoms, testing, treatment, prevention and case data.
• NIH / NIAID: the federal institute that funds and conducts research on diagnosing, treating and preventing Lyme disease.
• MedlinePlus: plain-language health information from the National Library of Medicine, with links to clinical trial listings.

How to find a local or online support group

Lyme support groups are often small and run by volunteers, so they come and go. These steps can help you find one that is active now:

1. Ask your care team. Mayo Clinic suggests starting with your provider, a social worker, your clinic or a local hospital.
2. Check national organizations. Global Lyme Alliance and LymeDisease.org both point to support group options on their websites.
3. Ask your local health department. In states where Lyme disease is common, staff may know of groups nearby. Find your state on our Lyme disease by state page.
4. Look for online groups carefully. Online groups are easy to join from home, which helps if you are tired or far from a city. Mayo Clinic notes they also carry extra risks, such as misinformation and people who prey on others.

What to look for in a healthy group

A good group leaves you feeling supported and better informed, not more frightened or more alone. Signs of a healthy group, drawn from Mayo Clinic’s questions to ask:

• A clear purpose, regular meeting times and a named organizer or moderator.
• Ground rules about privacy and respectful sharing.
• Free or low cost, with any fees explained up front.
• Room for different experiences, without pressure to agree with one view.
• Encouragement to keep working with your own medical provider.

If a support group raises topics such as treatments you have not tried, write them down and bring them to your next appointment. Our doctor visit guide can help you plan those questions. Groups are also a good place to hear about help with costs; see Lyme disease financial help.

Support for family and caregivers

Partners, parents and friends need support too. Many groups welcome family members, and some are just for caregivers. Our guide to caring for someone with Lyme disease has more ideas. If low mood or worry is weighing on you, see Lyme disease and mental health.

Connecting with others is step 7 of our plan. See the full roadmap at How to beat Lyme.

Frequently asked questions