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 diagnosed with mito. 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 mito. 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].