Diverse Genetic Disorders

06/08/2024

Be Strong 💪

06/08/2024

Mitochondria Disease Week

28/06/2024

Wat weekend

10/04/2024

Family Weekend!!

Lily Family Support Weekends are the most popular, most anticipated dates in the annual Lily calendar. A unique opportunity for families affected by mito to get together and relax in a safe and caring environment. How do we measure its success? https://ow.ly/S5t850OVVgR

17/03/2024

Very essential for MITO patients 👌

Physiotherapists can now access guidance on how to treat people with mitochondrial diseases, thanks to an NHS-led project involving The Lily Foundation.

07/03/2024

Always the best Lily Weekend to be surrounded with people of the same mind.

29/02/2024

Fairy Godmother

Fairy godmother? Check. Glass slippers? Check. Party outfit? Check. Now all you need is your ticket & you’re ready for the Cinderella Lily Charity Ball on Saturday, 23rd March! Music by the fabulous
Fully FunKtional. Find out more: http://ow.ly/Pk3s50Qi0JX

26/02/2024

26/02/2024

Back in 2020, The Lily Foundation funded a research study aiming to develop a framework to help identify the cause of balance problems in mito patients. That study is now complete, and the questions in the framework have been shown to accurately rule in or out vestibular causes of imbalance and dizz...

21/02/2024

What is Mitochondria 🙏🙏

07/02/2024

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.

05/02/2024

Rare Disease Day 2024 shines a light on the global and diverse community of over 300 million people living with a rare disease and their families. Learn more...

31/01/2024

If you're one of the many people who are already struggling with their new year goal to get fit in 2024, we have a solution to re-ignite your motivation. Sign up to a to improve your fitness AND help change the lives of others: https://www.thelilyfoundation.org.uk/get-involved/events/

26/01/2024

10/01/2024

Every hospital appointment is a reminder of how RARE your condition is 😮...That said you are a RARE Gem.

10/01/2024

Caring for a lovedone with Rare Genetic Disorders is full of surprises 😮 Everyday is a new day.

10/01/2024

The Lily Foundation Expert Patient Input Committee (EPIC) is an online committee made up entirely of mito heroes who will get the chance to have their voices heard to help shape research, clinical care and treatments. Find out more about this initiative: https://ow.ly/k9yY50Q06qW

09/01/2024

Plan your future. They might never find the Gene that caused the problem.
Keep living your best life possible

02/01/2024

Give your loved one a New Year's surprise by booking tickets for an enchanted evening at The Lily Foundation’s Cinderella Charity Ball on Saturday, 23rd March. Dust off your glass slippers, book your pumpkin carriage & you’re ready for the Cinderella Ball! https://ow.ly/GoMm50Qltor

02/01/2024

2024 we continue to find treatment for Rare Genetic Disorders and Raise Awareness...Be strong you are not alone😘

25/12/2023

There little research and funding available for Rare Genetic Disorders. Some of these disorders are difficult to diagnose.

13/12/2023

#
Living in suspense not knowing the fault gene.

06/12/2023

Everyday is different

28/11/2023

Living with a rare genetic disorder means you are the expert of your condition as every individual is different.

28/11/2023

Life full of Dr's appointments can be daunting but fulfilljng when you are getting the right support.

27/11/2023

"Wat no-one prepares you for is the personal feeling of failure wen your loved one is diagnosed with a Rare Genetic Disorder"

27/11/2023

Monday Morning 🌄.
Have a good week.
😘

24/08/2021

Casual Wear Summer Ready