Being diagnosed with a mitochondrial disease can feel overwhelming, frightening and isolating. Whether you've recently been diagnosed or have been living with the condition for some time, we're here to help.
As awareness and screening services improve, increasing numbers of people are being diagnosed with mito in adulthood. We offer the following support services to adults with mitochondrial diseases:
First and foremost we are here to listen. We understand that mitochondrial disease affects people in different ways, and every person living with the condition faces their own unique challenges. We're here to offer emotional support, answer any questions you might have or just listen to your story. To get in touch call confidentially on 0300 400 1234 or 07947 257 247, or email [email protected]
The Lily Foundation has launched a private Facebook group for adults in the UK who are affected by the disease. This is a place for you to connect with others who have a diagnosis of mito, share information and experiences, and hopefully make some lasting friendships. You can join via Facebook by clicking here.
Virtual Coffee Mornings
We host virtual 'coffee mornings' and online meet-ups, where people affected by mito can connect with others in their situation in a warm, informal setting. Often these events include Q&A sessions with specialist doctors and other experts working in the field of mitochondrial disease. These events aim to help people with mito feel less isolated and better informed about their condition.
Patient information days
We work in partnership with specialist mitochondrial clinics in Newcastle, Oxford and London to co-host a number of patient information days throughout the year. For details about upcoming events visit the events page of the NHS Rare Mitochondrial Disorders Service.
Young Adult Weekends
These annual two-day events offer young people with mito the chance to enjoy outdoor activities in a safe, disability-friendly environment, with specialist support provided by the Lily team. Feedback from participants has been overwhelmingly positive, with many saying they value the opportunity try stimulating new activities (including cycling, horse riding and hill treks), and connect with others living with mito.
Mental Health Support
We offer a specialised mental health service to support young people struggling with the psychological impact of living with a mitochondrial disease. The service provides therapy treatments and advocacy to people aged 14-25 who are affected, including siblings of those with mito.
We work closely with the UK's top mitochondrial research groups to link patients with new studies and clinical trials, which are critical to furthering understanding of the condition and developing effective treatments. If you'd like to be involved kindly complete our short online survey so we can inform you about studies that are relevant to you.
We have our own dedicated benefits advisor who can help you navigate the UK benefits system and get the financial support you are entitled to. Click here for a short summary of the benefits available for young people and adults with mitochondrial disease.
If you are a young adult aged 18-25 you may be eligible for additional support services currently available under our Family Support section.