LymeHQ · Resource directory
Who else is out there
Advocacy organisations, government programmes, professional societies, research centres, laboratories, apps, educational material and financial assistance — described by what each one does, in alphabetical order, with no ranking of any kind. Including the tools that do what we do.
42 organisations across 10 categories, alphabetical within each, described by what each one does. Orientation, not endorsement — an entry is here because the organisation exists and does something specific in this field, never because we agree with it and never because it agrees with us. Nothing is ranked, scored or recommended. The rule that decides what gets listed is below the directory, in full.
Each entry carries the date a person last read it against the organisation’s own public material. That date is not a link check and not an edit date. It is an attestation, and it is printed because nothing here can derive whether a description is still true: a funding programme can close or a body can wind down without a line of our code changing. A date on a screen makes going stale visible instead of silent.
If you want to understand how these organisations relate to each other rather than look one up, where the data goes draws the channels a patient’s record travels down and asks what comes back.
01 · The directory
Filter it, or read it straight through
Alphabetical within each category. The only thing the filters do is remove rows.
Showing all 42 entries
Every entry checked 2026-08-30
Government bodies and programmes
The federal agency that receives Lyme case reports from states, publishes the national counts, and issues prevention and testing guidance.
We use this as a data source. The case counts on our surveillance guide and our map are CDC’s published figures, re-derived from CDC’s own datasets on every run rather than transcribed.
The federal registry of clinical studies, including studies recruiting people with tick-borne disease.
The association of state epidemiologists that writes the surveillance case definitions national disease reporting runs on.
A federal platform where a clinician can record how they treated a difficult infection, including treatment used off-label.
The NIH institute that funds and conducts research on Lyme disease and other tick-borne infections.
The public registry of surveillance case definitions — the written rules a state uses to decide whether a report counts as a case.
A federal advisory committee that reported to Congress on the national response to tick-borne disease prevention, treatment and research.
No longer operating. No longer active. Authorised by the 21st Century Cures Act in 2016 for six years; health.gov states the authorisation expired in December 2022. Its reports to Congress remain published.
Professional societies
A professional society for neurologists, and a co-author of the 2020 Lyme disease clinical practice guideline.
A professional society for rheumatologists, and a co-author of the 2020 Lyme disease clinical practice guideline.
A professional society for infectious-disease clinicians; it published the 2020 Lyme disease clinical practice guideline jointly with the American Academy of Neurology and the American College of Rheumatology.
A professional society for clinicians treating Lyme and associated diseases; it publishes its own treatment guidelines and runs clinician training.
Advocacy organisations
A non-profit that funds Lyme research, runs a free tick testing programme, and supports the Lyme Disease Biobank.
A membership organisation that works to increase federal funding for Lyme and tick-borne disease, and briefs the executive and legislative branches.
A non-profit that awards research grants, publishes patient education, runs support and mentoring programmes, and operates a physician referral network.
A patient non-profit that publishes The Lyme Times, runs advocacy on treatment and insurance, and operates the MyLymeData registry.
A non-profit that publishes patient education, hosts support groups and meet-ups, and runs a search tool for clinicians experienced in tick-borne illness.
Registries and biobanks
A biorepository, supported by the Bay Area Lyme Foundation, that collects blood, urine and tissue from patients and sends samples to approved researchers.
A patient-reported registry run by LymeDisease.org: patients record diagnosis, treatments and outcomes over time, and researchers study the pooled data.
Research centres
A university research centre running clinical studies, a patient registry and a trials-network coordinating centre for tick-borne diseases.
A university research centre running patient-based studies across the manifestations of Lyme disease, and publishing its findings.
A CDC-funded centre at Cornell doing vector surveillance research, public-health entomology training, and educational resources for the Northeast.
Testing laboratories
A non-profit national reference laboratory at the University of Utah that runs tick-borne disease serology for ordering clinicians.
A specialty laboratory offering direct and indirect detection testing for Bartonella, Babesia and Borrelia.
A specialty laboratory offering its own panels for Lyme, relapsing fever and other tick-borne infections, and testing of submitted ticks.
A national clinical laboratory, and one of the places a clinician’s Lyme serology order is commonly run.
A national clinical laboratory, and one of the places a clinician’s Lyme serology order is commonly run.
A mail-in service, operated by MedZu Inc., that tests a tick you send in for the pathogens it was carrying. It tests the tick, not the person.
Apps and tools
A free symptom-diary app from Global Lyme Alliance, built with TrialX, that tracks symptoms and activity and exports a record to share with a clinician.
A free symptom-tracking app for logging symptoms, treatment rounds and tick bites, and producing a report to take to a clinician.
A free app for reporting and viewing tick sightings by location, with tick-removal and prevention guidance.
Educational resources
Publishes the Tick Management Handbook, a guide to reducing ticks around a home, and runs a tick testing laboratory for Connecticut residents.
A University of Rhode Island centre whose TickSpotters service identifies a tick from a photo you submit, alongside prevention guidance.
A non-profit offering free accredited continuing medical education for clinicians on vector-borne disease.
Financial assistance
A foundation awarding grants toward Lyme medication for children who cannot afford it, funding research, and operating the TickTracker app.
A non-profit awarding treatment and testing grants to people with Lyme disease, and funding research.
A patient assistance programme, run by a Rotary Club foundation, that reimburses part of the cost of initial Lyme testing for people in financial hardship.
A foundation awarding grants to children and young adults with Lyme disease toward treatment and medication.
A national non-profit offering case management and financial aid to people with chronic illness, including help answering an insurance denial.
Veterinary and One Health
A veterinary body publishing parasite guidelines and county-level prevalence maps, including canine Lyme disease.
An in-clinic veterinary test that screens a dog for heartworm and for antibodies to Borrelia, Anaplasma and Ehrlichia, using a C6 peptide for Lyme.
The Companion Animal Parasite Council’s public site: local forecasts and alerts for Lyme, anaplasmosis, ehrlichiosis and heartworm risk to pets.
02 · What gets listed
The rule, so no entry is a judgement call
This field has an active clinical disagreement running through it. A directory that lists both sides needs a stated criterion, or it is just our preferences with a search box.
An organisation is listed when all three of these hold:
1
It is a named body with a stable public address of its own.
Not an individual, not a page inside somebody else’s site, not a project whose address no longer answers.
2
It has a specific function in tick-borne disease.
It holds data, publishes guidance, funds work, runs a service or a community, or sits somewhere a patient will be routed. If nobody in this field would ever pass through it, it is not part of this field’s map.
3
That function can be stated in one sentence, verified from its own public material.
Every description here was written by reading the organisation’s own site, not from memory. Two candidates were dropped during the build because their pages would not confirm what we were about to write about them.
What the entries do and do not say
Where we have a relationship with an organisation, its entry says so. Where we do not, its entry says nothing — because a “no relationship” badge on forty entries is noise that trains you straight past the two that matter. Every declared relationship carries a proof our own checks resolve against the code.
And the part that actually decides the hard cases
A position is never a criterion. Not for listing, not for leaving off, not for ordering. Two societies that disagree about how this illness should be diagnosed and treated are listed the same way, in the same category, in the same alphabetical order, each described by what it does. Where the disagreement is itself the relevant fact, an entry says that a body publishes guidelines — a statement about documents, which is checkable — and never which guideline is right. Nothing on this page tells you who to believe.
Including the ones that compete with us
Two of the entries under Apps and tools are symptom trackers, which is a thing LymeHQ also is. They are here because they meet the rule above, and leaving them off would be an exclusion on grounds of position — the rule broken by us first, on our own page, in our own favour. A platform that needs people to stay is a platform that cannot be a map.
03 · What is not here
The deliberate absences
A directory implies completeness. These are the things it does not cover, and the reason for each.
Individual clinicians and practices
Naming a clinician is a much stronger claim than naming an organisation, and it is not made here. It is made on the clinician directory, which has its own verification mechanism and its own record of who checked what. Several organisations listed above run their own referral lists, and their entries say so.
Peer communities on Reddit, Facebook and Discord
They are a real and load-bearing part of this field, and for many people they are the first place anyone believed them. They are not listed individually because they change hands, they have no identifiable operator, and a link we cannot keep current is worse than no link at all. Organisations above that run moderated communities and support groups are listed, and their entries say so.
Anything we could not verify
Two candidates were dropped while this page was being built, and both are worth stating rather than quietly omitting. One is a long-standing advocacy organisation whose site would not respond, and whose remaining public traces suggest it is winding down — we could confirm neither that it is operating nor that it has closed, and either sentence would have been a guess. The other is a research app whose former address now serves unrelated commercial content, which is exactly the failure a link we had not opened would have shipped.
Which specific tests are FDA-cleared
Some tests offered by the laboratories above are cleared by the FDA; others are laboratory-developed tests offered under CLIA. That distinction changes how a test is regulated and how a plan treats it, and it is a per-test fact that changes over time — we have not verified it test by test, so no entry here implies an answer. It is a reasonable question to put to a laboratory directly, and to your plan.
If something here is wrong
A description that has gone out of date, a programme that has closed, an organisation that belongs here and is not — those are all worth telling us about, and the address on the privacy page reaches a person. Being listed here is not something anyone applied for, and being removed is not a judgement about the organisation.
Where to go next
- The other half of thisWhere the data goesHow these organisations connect — the six channels a patient’s record travels down, and the two that bring anything back.
- Finding careClinician directoryClinicians who have listed themselves, what a verified badge is evidence of, and what the filters do not check.
- Paying for itCosts & insuranceWhich parts of this care are usually covered, which get argued over, and what to have before anyone says no.
- The illness itselfEducation libraryTicks, testing, coinfections, treatment and the rest — written here rather than linked out.