#Mito is a genetic disorder that can cut lives tragically short. Thanks so much to Maisie, Grace & Keira's brave families for sharing their very personal stories to help raise awareness & support our work to find treatments & a cure for mito. Learn more: ow.ly/obky50Rcok0

Lily Fight Night returns @theclaphamgrand Thursday 2nd May. Come along to support the brave men and women gong toe-to-toe to help fight #mito It's always a fabulous evening, just £25 entry. Street food for sale at the venue. More info: ow.ly/SNVW50R8suA

One of the challenges facing people living with #raredisease is the sense of #loneliness & #isolation -a sense of not belonging. #LilyFoundation supports #mitochondrialdisease patients like Amy, and their families, helping them not feel so alone. thelilyfoundation.org.uk

Read our interview with Renata, a bioinformatician working on #LilyFoundation Precision #Diagnostics project London Mitochondrial Centre Learn more about her work and passion for making a difference to the lives of people searching for a diagnosis. ow.ly/LZPl50QKKfv #mitochondrialdisease

It will get tough out there TCS London Marathon race day. We will be there cheering our #lilyfoundation runners, and all the amazing people taking part. Would love to hear our #Lily runners WHY..... x

In partnership with The #LilyFoundation NHS HSS for Rare Mitochondrial Disorders Oxford team are holding a Clinical Study day for any health professionals working with mitochondrial disease patients. More details on the attached poster. To register please complete this form: freeonlinesurveys.com/s/lMMwD63V

Love cycling? Want to raise money for a great cause? Sign up to the 100 mile @ridelondon event on Sunday, 26th May and help make a difference to the lives of people affected by mitochondrial disease. No min fundraise. More info: ow.ly/bkwn50R8e3w #cycle #london #mito

Run the @royalparkshalf marathon for #LilyFoundation on Sunday, 13th October & help change lives. This popular route is largely flat & weaves you through 4 of our capital's stunning Royal parks. Fab crowd support & celebratory Team Lily drinks to finish! ow.ly/GMQJ50R8cPN

Looking for a 10k challenge with a difference? How about the #AltonTowers 10k run on Saturday, 16th November. Entry to the race includes park entry on that day. Other distances available on the same weekend. Find out more & sign up: ow.ly/vEjT50R8cvu

Support The #LilyFoundation with a tea & cake fundraiser on 17th May! It's simple - invite friends & family/your neighbours/colleagues for tea & cake to raise awareness of #mito You could even try out mito warrior James' #bananabread recipe! More info: ow.ly/oxLj50Rb3mN

#LilyFoundation Research Manager Dr Maria O'Hanlon is delighted to be speaking on Monday 13th May. Maria's presentation, 'Beyond the stroke: Understanding mitochondrial disease complexities' aims to give a first-hand insight into the unique challenges faced by patients with mito.

Lily #FightNight certainly packs a punch as a fantastic evening out at the popular @theclaphamgrand Thurs 2nd May.Thrilling competition between our amateur boxers, special guest host Adam Leventhal & Sky Sports commentary team. #charityboxing at its best! ow.ly/q7YF50R7AZc

Calling #Mito #Researchers ! Looking to include the patient voice in your research, look no further! Our Expert Patient Input Committee made up of #mito patients, their families & carers keen to help shape research, clinical care & treatments. Email:[email protected]

Let them eat #cake . And drink #tea . And make a difference for #mito patients everywhere!! The concept is simple, get together with friends/colleagues/local community for a cuppa & spread the word about mito! Learn more about our Mito CommuniTEA party: ow.ly/W8uk50R7AwY

Best of luck to Leanne who is having a Bake Sale to raised funds for us, in memory of her friend Millie's 4 month old baby boy, Otto, lost to #mitochondrialdisease Team Remembering Otto have raised almost £120k in just over 12 months & are helping to fund our diagnostic project.

Our screw top Fighting mito water bottles are made from double-walled metal to help keep the contents cool, but are equally suitable for hot drinks.They proudly display #LilyFoundation logo on a classic brushed steel background. £15 from our online shop: ow.ly/pInT50R6IF1

Our new #LilyFoundation baby pink t-shirts are proving to be a great hit with our younger supporters. Don't miss out on these limited edition t-shirts, just £10 from our online shop: ow.ly/zt3o50QxlS2 #mitoaware

The average diagnostic delay for rare disease patients is 4-5 years. For Danielle is was over 30 years before she was diagnosed with #mito In this short film Danielle shares her personal expereince & talk about why getting a #genetic diagnosis is important for patients.

The #LilyFoundation ’s Mito Communi-TEA Party – bringing positivi-tea to the mito community! Register now for your very own fundraising pack with sandwich flags, cake toppers & more. Host your event on 17th May or another date that suits you. Full details: ow.ly/w4OM50R6wvM

Dr. Stella Johnson Cardiff University recently talked to us about her research into #mito chondrialdisease patients' experience of #diagnosis Read more: ow.ly/6zab50QK1sH #raredisease #mito #lilyfoundation