@mitocamb
MitoCAMB brings together a team of clinical researchers focused on mitochondrial and neurodegenerative disease translational research. mitocamb.medschl.cam.ac.uk (Photo: Florian Klimm)
See how you helped to make a real difference last year 🤩🙌
Read The Lily Foundation Impact Report for 2024/25.
Read it here -
https://www.thelilyfoundation.org.uk/media//the_lily_foundation_impact_report_2024-25.pdf
Collectively, there are around 7,000 rare diseases, yet the voices of the people and families living with these conditions are rarely heard.
Today, we're sharing some of these stories and reminding people of the millions of lives impacted by rare disease.
#RareDiseaseDay
To mark #RareDiseaseDay, we worked with the @newstatesman1913.bsky.social and key industry voices to create a rare disease report looking at where the opportunities lie to create better outcomes for patients: https://t.ly/EyekY
“Rare Disease Day” title slide with WiNUK logo and Rare Disease Day colourful hand symbol on dark teal background.
Explains that rare diseases affect fewer than 1 in 2,000 people, but impact 1 in 17 overall, including 3.5 million in the UK.
Describes Rare Disease Day as the last day of February, raising global awareness and calling for more research and support. Illustration of a child using a wheelchair.
Slide titled “Global Charities Supporting Rare Diseases” with small illustrated characters on dark teal background.
Today is Rare Disease Day (28th Feb 2026).
Rare diseases impact over 300 million people globally — yet patients often experience long diagnostic journeys and limited treatment options.
#mito @mrc-mbu.bsky.social @taylorlabncl.bsky.social @londonmito.bsky.social @mitonewcastle.bsky.social
Rare isn’t rare when it affects millions...
Did you know? 3.5 million people in the UK are living with a rare condition.
Share to help raise awareness and show your support for the rare disease community.
#RareDiseaseDay #MitoAwareness #ShowYouCare
If you are near Cambridge UK, come to our #LivingRare event at the DISC on 27 Feb - perfect for anyone who works on the Cambridge Biomedical Campus or at Addenbrookes, Papworth or Rosie Hospitals!
camrarerarediseaseday2026.eventbrite.co.uk
We’re excited to share 'Rare Perspectives' - an insightful discussion at #RAREsummit25, where our panelists came together to discuss the realities of both living (and working) rare.
Some members of our audience share their ‘top 5 rare priorities’. What are yours?
youtu.be/jzq7wDS4kFQ
#RareDiseaseDay
To all #mitochondria lovers: Euromit 2026 early-bird registration is coming up!
Very excited for @cuh.nhs.uk and @camneurodept.bsky.social to be involved in this first in human trial: investor.stoketherapeutics.com/news-release...
The Lily Family Support Weekend is a unique opportunity for our families to get together and relax in a safe, caring environment where people just ‘get it’.
Your donations make support weekends as well as vital research possible 🩷
Today, we're sharing an open letter from our Chief Executive, Professor Sir Ian Chapman, outlining changes to UKRI investment approach, and addressing concerns about research funding and the financial position of STFC. Read his letter here: www.ukri.org/news/open-le...
Graphic using Rare Disease Day branding. Title CamRARE, living rare. Photos of speakers along the bottom edge of the image, including two young adults.
Join #CamRARE in Cambridge (27 Feb) for #RareDiseaseDay
Through powerful lived-experience stories & a multidisciplinary panel, we’ll explore what it means to live with a rare condition & how systems can better respond throughout a lifetime.
Tickets: camrarerarediseaseday2026.eventbrite.co.uk
Milner Seminars: focus on neurodegeneration 🧠
We're excited to welcome you to our 2026 seminar series! Join us on 27 January for talks by Daniel Tams (Astex) and Stefano Pluchino (University of Cambridge)
🔗 https://milner.glueup.com/event/milner-seminars-focus-on-neurodegeneration-163500/
We have entered our fabulous 'What It Takes' video into the 2026 Smiley Awards, and we need YOU!🩷
For a chance for us to win we need you to vote for us ⬇️
https://smileycharityfilmawards.com/films/what-it-takes
Final week to get your applications in!!
Closes 12/01/2026. A great team and a great centre to be a part of!
@camneurodept.bsky.social @taylorlabncl.bsky.social @jellevda.bsky.social @ritahorvath.bsky.social @robpitceathly.bsky.social
Need a change? Then apply to join our Cambridge team working on #mito disease!
Research coordinator post now live, working with @mitonewcastle.bsky.social @londonmito.bsky.social @lilyfoundation.bsky.social on the @lifearc.bsky.social centre for Rare #mito diseases!
www.cam.ac.uk/jobs/clinica...
Every donation to The Lily Foundation will be matched pound-for-pound, thanks to a group of generous supporters, up to £2,250!
For example
🎁Give £10 → It becomes £20!
🎁Give £20 → It becomes £40!
And so on…
Click here to donate today!
https://www.justgiving.com/campaign/lilychristmas2025
Latest paper in collaboration with the Nicholls lab 🎉 Out in @narjournal.bsky.social
academic.oup.com/nar/article/...
This ‘fundamental’ study uncovers how directing pyruvate into mitochondria can shrink cells by shifting their metabolism away from building amino acids and proteins.
buff.ly/hFHjKy9
Some amazing work that's all over the News this morning. This important work is co-funded by @lifearc.bsky.social who also co-fund our LifeArc Centre for Rare Mitochondrial Diseases bit.ly/4moq7xV
#rarediseases #LifeArc
👁️ 23 November: ADOA Awareness Day 🌍
On Sunday 23 November it’s ADOA Awareness Day!
A day for raising global awareness for the hereditary eye conditions ADOA and ADOA-plus.
You can help The Cure ADOA Foundation increase awareness of ADOA by sharing this post.
bit.ly/4o5iLzY
#ADOAawarenessDay
🎙️ Focus Speakers – Rita Horvath
👀 Curious to know who will be speaking at #euromit2026
✨ Today, we’re introducing Rita Horvath.
👉 Stay tuned: every week for a month, new speakers will be featured.
#euromit2026 #speakers #mitochondria #angers #scienceconference
Image of Professor Michal Minczuk and his biography. Michal Minczuk will be speaking at Euromit on Wednesday 3 of June 2026 during the Session 5 entiteld "Innovative technologies". Michal Minczuk is a professor of Mitochondrial Genetics in the Department of Clinical Neurosciences at the University of Cambridge, UK. His research is focused on mitochondrial genetics, as well as on the development of innovative genome engineering technologies, to bring future therapies for diseases caused by mitochondrial dysfunction.
🎙️ Focus Speakers – Michal Minczuk
@mitogene.bsky.social
👀 Curious to know who will be speaking at #euromit2026 ?
✨ Today, we’re introducing Michal Minczuk who will be taking the stage at the congress.
#euromit2026 #mitochondria #angers @univangers.bsky.social @ua-recherche.bsky.social
📢 Check out this exciting new study by Professor Patrick Chinnery from @mrc-mbu.bsky.social, who will be joining #Euromit2026 as keynote speaker!
pubmed.ncbi.nlm.nih.gov/41066576/
#MitochondrialDisease #mtDNA #mitochondria #euromit2026
@ua-recherche.bsky.social @chuangers.bsky.social
A group of us from the LifeArc Centre for Rare Mitochondrial Diseases bit.ly/4moq7xV attended the LifeArc Translational Centres for Rare Diseases Annual Showcase yesterday @lifearc.bsky.social. Great to make connections and share knowledge with the other rare disease centres
#LifeArc #rarediseases
A brilliant explainer from The Lily Foundation on the science behind genetic diagnosis in mitochondrial disease — featuring cake as a metaphor! 🍰
youtu.be/MCx4joZJtFY
#Mito #MitochondrialDisease #GeneticTesting #RareDisease #ClinicalResearch #TheLilyFoundation
So great to hear about some of the amazing work being done at the MRC Mitochondrial Biology Unit @mrc-mbu.bsky.social yesterday. There is much more today too.
Hopefully you have been able to catch up with some of the latest in #Mito research.
Open to MRC MBU members only.
Congrats Michele! Great work! @jellevda.bsky.social @mrc-mbu.bsky.social @mbu-postdocs.bsky.social