Young Adult Support Weekend
Young people living with mitochondrial disorders come together for two days in the Lake District to enjoy outdoor activities in a safe, disability-friendly environment. It’s quality time for patients, accompanying carers and parents to challenge and support each other as well as socialise.
Patient Information Days
In partnership with specialist NHS mitochondrial disease clinics in Newcastle, Oxford and London, we co-host these occasions which offer an informal atmosphere for visitors to socialise and receive support and information from medical professionals.
Access to medical registries
Registries are a great way for patients to share details of their condition that can then be used to improve mitochondrial disease care, guide research and help develop new treatments.
Medical alert cards
We fund medical alert cards for patients, which provide key contact details of a patient’s specialist that can be presented to hospital teams unfamiliar with mito disease during an emergency admission.
Counselling service
Living with a rare condition like mitochondrial disease can bring as many psychological challenges as physical ones, and that’s why we’re delighted to be partnered with Rareminds to offer a free, confidential online counselling service to individuals and families affected by these rare inherited conditions.
Someone to talk to
Everyone’s mito journey is different, and every person living with the condition faces their own challenges. But help is available – whether it’s a specific question, a reassuring chat or some emotional support, we’re here to listen.