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

Fighting mito,
finding hope.

Support for 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 building strong working relationships with healthcare professionals who care 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:

  • We maintain the NHS Rare Mitochondrial Disease Service website, which has a dedicated area for professionals containing disease information and clinical guidelines.
  • 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.
  • And we offer practical and emotional support services for families facing a diagnosis of mitochondrial disease, 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 Patient Engagement & Advocacy Manager, Katie Waller, at [email protected].