Being diagnosed with mitochondrial disease in adulthood can feel overwhelming, frightening and isolating. Whether you've recently been diagnosed or have been living with the condition for some time,The Lily Foundation is here to help.
As awareness about mitochondrial disease grows and screening services improve, more patients are being diagnosed in adulthood than ever before. In recognition of this, The Lily Foundation offers the following support to adults with mitochondrial disease:
Someone to talk to
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.
Patient information days
The Lily Foundation works 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.
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.
If you are a young adult aged 18-25 you may be eligible for additional support services currently available under our Family Support section.