There’s plenty going on in the world of mitochondrial disease, and you can learn all about our work and read the latest news articles and blogs from across all areas of our charity here.
From personal stories about families affected by the disease to the latest research projects and plenty more, why not sign up to our newsletters, and follow us on social media, to ensure you never miss a thing.
Filter by category:
All Articles Support Research Events Personal stories Awareness Fundraising Fitness
Support 30 April 2024
On a sunny Saturday in April, around 60 patients living with mitochondrial disease and their families, along with a team from The Lily Foundation, made their way to UCL’s Patient Information Day held at the National Hospital for Neurology & Neurosurgery.
Support 18 January 2024
Living with a rare condition like mitochondrial disease can bring as many psychological challenges as physical ones. That’s why we’re delighted to be teaming up with Rareminds to offer a new free, confidential counselling service to individuals and families who are affected by mito.
Support 2 December 2023
As many of us come together with family and friends at Christmas, it’s a time to reflect on those we love as well as those we’ve lost. To mark National Grief Awareness Week (2nd-8th December) we spoke with Consultant Clinical Neuropsychologist Dr Ben Marram about loss and how to deal with it. Because we will all, within the mito community and without, experience grief and loss of some kind during our lives.
Support 17 April 2023
One of the reasons The Lily Foundation exists is to help give a voice to mito patients and their families, to enable them to have a say in the services and support available. A lot has changed in the last 15 years, and we’re proud of the progress we’ve made, but we don’t intend to rest on our laurels, because understanding mitochondrial disease is the key to unlocking effective treatments and that eventual cure.
Support 14 April 2023
As part of our mission to support families affected by mitochondrial disease, we believe that should cover financial support too. So we’re delighted to welcome our new Benefits Advisor, Chrissy, to the Lily team. We caught up with her to see how she’s planning to help mito patients and their families navigate the tricky topic of financial welfare.
Support 30 March 2023
Being diagnosed with mitochondrial disease can be not only a frightening and upsetting time, but it can also be very lonely. Because mito is so rare, sometimes friends and family just don't understand, so it’s hard to find people who are in the same situation to talk to, to share hopes and fears with, and find support. And that’s why The Lily Foundation have been bringing people together for the last 15 years.
Support 10 March 2023
Last week saw the first in-person mito Patient Information Evening since the Covid pandemic, and it’s clear from the attendance – and distances travelled – that everyone was delighted to be able to come together in person once again.
Support 27 February 2023
For 15 years now we’ve been providing much-needed support to sufferers of mitochondrial disease, their families and carers. There are lots of ways to make the lives of affected families easier and more enjoyable, but they can come at a price. And that’s why we’re delighted to launch the Lily Wish Fund.
Support 3 February 2023
At the recent 49th British Paediatric Neurology Association conference in Edinburgh, we found ourselves one of just eight exhibitors invited to host a stand and display our work. What’s more, it was with great excitement that we discovered The Lily Foundation were the only charity selected to deliver an oral presentation at the event.
If you have any problems please email [email protected]
