Lyme Disease Action

Lyme Disease Action

At a glance


  • Health and well being / research and care

Other details

Organisation type: 
Geographical remit: 
National - Britain


Lyme Disease Action is a small national charity run entirely by volunteers. Established in 2003 we aim to address the current lack of awareness of Lyme disease and other tick-borne diseases amongst both the public and health professionals. Currently many people are undiagnosed, at a considerable cost to the state, health professionals and the patients themselves.

Our mission is to improve the diagnosis and treatment of Lyme disease and tick-borne diseases for patients in the UK and help restore public confidence in the NHS in this area.


Our activity is focused on

  • producing well-researched resources for people to use and to pass on
  • stimulating the increase and spread of accurate knowledge about Lyme disease and tick borne diseases generally;
  • working with government agencies and health professionals to improve provision for Lyme disease patients.

Our core activities include

  • Awareness literature. Accredited to the PIF Tick, we produce posters, leaflets and a comprehensive website containing well researched information.
  • Running webinars, and pre-Covid an annual conference. Including a variety of presentations from UK and overseas experts, these are also a forum for patients and health professionals to compare notes with peer groups.
  • Email help desk for both public and medics answering individual queries.
  • Medical conferences and exhibitions. We attend these to raise awareness of the issues amongst health professionals and to provide them with quality information.
  • Stimulating research. We undertook a project to define the uncertainties and the top priorities for research. We are now working on another research project to determine a Core Outcome Set for Lyme disease.

Underpinning this activity is a small, dedicated team of volunteers who have all had experience of the disease. 

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