Individually rare. Collectively common. The @newstatesman1913.bsky.social special rare disease report explores what more can be done to deliver faster diagnoses and better treatments.
👉 Read now: https://t.ly/EyekY
Wonderful and honoured to write a perspective with @prudentlab.bsky.social @mrc-mbu.bsky.social on such an intriguing and cool observation of beautiful mitochondrial biology! Amazing work on how pearling allows mitochondrial genome organisation by @jclandoni.bsky.social @sulianamanley.bsky.social!
Congratulations!! A labour of love.
Interested in Pre-clinical Mitochondrial Disease Models?
MRC MitoCluster is delivering a session this May at Queen Square Advances in Mitochondrial Medicine 2026. Register now to join!
#MitochondrialDisease #MitochondrialMedicine #mtDNA #GeneticEngineering #PreclinicalResearch #RareDisease
We've worked really hard to create a easy accessible guide for those who are facing a new diagnosis of mitochondrial disease. 📖🩷
It's perfect for reading through for yourself or to send to a loved one to help keep them informed. Check out our fabulous new guide to mito.⬇️
https://ow.ly/391g50Yoxyj
Clinicians and researchers with an interest in #mitochondrial disease: Queen Square Advances in Mitochondrial Medicine (5 May 2026) is a CPD-approved course covering pre-clinical & translational research, and the latest updates in NHS diagnostic testing. Registration: www.ucl.ac.uk/brain-scienc...
A years-long diagnostic odyssey is a reality facing many people living with a rare disease.
This special @newstatesman1913.bsky.social Spotlight podcast episode explores why. 🎧Listen now: t.ly/flE_n
@jellevda.bsky.social @ritahorvath.bsky.social @lilyfoundation.bsky.social @londonmito.bsky.social @mitonewcastle.bsky.social
More trials, better data, faster access.
We worked with Genetic Alliance UK to develop a new report from the LifeArc Translational Centres for Rare Disease Hub, setting out how smarter policy can accelerate rare disease research.
Read more 👉 https://t.ly/LJRi4
✨ Lily Adult Support Weekend 2026 ✨
We’re delighted to share that our Lily Adult Support Weekend will take place on 14th-16th August 2026 at Chesford Grange Hotel, Kenilworth.
Read more:
www.thelilyfoundation.org.uk/affected-by-mito/here-to...
See how you helped to make a real difference last year 🤩🙌
Read The Lily Foundation Impact Report for 2024/25.
Read it here -
www.thelilyfoundation.org.uk/media//the_lily_foundati...
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)
🔗 milner.glueup.com/event/milner-seminars-fo...
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/...