Family Support Weekend
A wonderful chance for families affected by mitochondrial disease to come together and find support.
A mitochondrial disease diagnosis can feel overwhelming – frightening, upsetting, and often isolating. Because mitochondrial disease is so rare, sometimes friends and family struggle to fully understand what you’re going through. This can make it hard to find others who share your experiences, leaving you without the support you need during a difficult time.
The good news is you don’t have to face these challenges alone.
Talking to someone who truly understands your situation can bring a sense of relief and clarity, and help you to find a way forward. Our conversations are always private and confidential, and we fully respect your right to make decisions that feel best for you.
If you need to talk, we’re here to listen. You can contact Liz by calling 0300 400 1234 or 07947 257247, or by emailing [email protected].
We’re also available through our social media channels, where we closely monitor messages to respond as quickly as possible. Many members of The Lily Foundation team have direct experience with mitochondrial disease, which makes a meaningful difference in the support we can provide to families.
We offer a variety of support services to help patients and their loved ones navigate life with mitochondrial disease. Explore how we can support you on your journey.
A wonderful chance for families affected by mitochondrial disease to come together and find support.
Young people affected by mitochondrial disease can take part in exciting adventures together.
An informal occasion where adult mitochondrial disease patients can meet up and spend time together.
We provide a free counselling service for patients affected by mito in conjunction with Rareminds.
Helping you to feel less isolated and better informed about your mitochondrial disease diagnosis.
Understand what financial support you might be entitled to if you have a mitochondrial disease diagnosis.
Informal occasions enabling you to socialise whilst learning more about mitochondrial disease.
If you have a mitochondrial disease diagnosis, become part of our community and stay in touch.
Little life hacks to make living with mitochondrial disease that little bit easier every day.
If you have any problems please email [email protected]