Support for mitochondrial disease professionals - The Lily Foundation
The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Support for mitochondrial disease professionals

Lily member of staff talking to a lady about the services The Lily Foundation offers

As well as supporting families, The Lily Foundation are committed to providing support for mitochondrial disease professionals ie. any healthcare professional who cares for children and adults affected by mitochondrial disease.

We work hand in hand with the three Highly Specialised Services (HSS) for mitochondrial disease in Newcastle, Oxford and London Queen Square, as well as other major centres who offer expert care for mitochondrial disease patients, including Cambridge, Great Ormond Street, London Evelina and many others.

There are many ways we work to support our NHS clinical teams

  • Our Lily Precision Diagnostics Project offers enhanced diagnostic testing for patients who have exhausted routine NHS testing but where there is still a high suspicion of mitochondrial disease. The cost of this testing is covered by the charity and any new findings are clinically validated and passed back to the referring clinician for delivery to patients. For more information please visit the project page or contact [email protected].
  • We’re able to distribute a free reference book to non-specialist doctors who care for patients with a mitochondrial disease diagnosis. Clinical Mitochondrial Medicine, edited by Patrick Chinnery and Michael Keogh with contributions from members of our Lily Medical Board, is an ideal resource for medical professionals who want to expand their understanding of mitochondrial disease.
  • We’re happy to come to clinical study days or medical conferences to talk to your medical teams about our work to support patients with mitochondrial disease. We also support Patient Information Days, which enable patients to learn more about their condition and understand how to access the information and resources they need.
  • Medical alert cards provide key contact details of a patient’s specialist that can be presented to hospital teams unfamiliar with mitochondrial disease during an emergency admission. We currently provide alert cards for the teams at Bristol, Cambridge, Glasgow, London UCL and Oxford, but would be delighted to discuss providing them to any specialist mitochondrial or metabolic team who cares for mito patients.
  • And we offer practical and emotional support for families facing a diagnosis of mitochondrial disease, details of which you can find on our mitochondrial disease support page, helping to complement the clinical care offered by NHS teams.

If you’d like further information about any of these services, or would like to distribute Lily Foundation leaflets in your clinic, please contact our Head of Patient Programmes, Katie Waller, at [email protected].