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
19.02.2026 15:23 β π 4 π 1 π¬ 0 π 0
YouTube video by Cambridge Rare Disease Network (CamRARE)
RAREsummit25 - Rare Perspectives - Career, Family and Rare Disease Advocacy
Weβre 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 βtop 5 rare prioritiesβ. What are yours?
youtu.be/jzq7wDS4kFQ
#RareDiseaseDay
13.02.2026 15:21 β π 4 π 1 π¬ 0 π 0
To all #mitochondria lovers: Euromit 2026 early-bird registration is coming up!
11.02.2026 15:53 β π 6 π 4 π¬ 0 π 0
Very excited for @cuh.nhs.uk and @camneurodept.bsky.social to be involved in this first in human trial: investor.stoketherapeutics.com/news-release...
11.02.2026 17:57 β π 0 π 1 π¬ 0 π 0
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 βget itβ.
Your donations make support weekends as well as vital research possible π©·
09.02.2026 16:30 β π 3 π 1 π¬ 0 π 0
Open letter from Ian Chapman to research and innovation community
UKRI Chief Executive outlines changes to UKRI investment approach, addressing concerns about research funding and the financial position of STFC.
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...
01.02.2026 17:16 β π 23 π 34 π¬ 9 π 25
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, weβll explore what it means to live with a rare condition & how systems can better respond throughout a lifetime.
Tickets: camrarerarediseaseday2026.eventbrite.co.uk
26.01.2026 09:09 β π 6 π 6 π¬ 0 π 0
We have entered our fabulous 'What It Takes' video into the 2026 Smiley Awards, and we need YOU!π©·
For a chance for us to win we need you to vote for us β¬οΈ
https://smileycharityfilmawards.com/films/what-it-takes
13.01.2026 15:01 β π 0 π 1 π¬ 0 π 0
Final week to get your applications in!!
06.01.2026 18:31 β π 0 π 0 π¬ 0 π 0
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
12.12.2025 16:12 β π 1 π 1 π¬ 0 π 0
Clinical Research Coordinator (Fixed Term)
The University of Cambridge wishes to appoint a dynamic research coordinator to join the Cambridge Clinical Mitochondrial Research Group (MitoCAMB) in the Department of Clinical Neurosciences.
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...
12.12.2025 16:10 β π 1 π 1 π¬ 1 π 1
Every donation to The Lily Foundation will be matched pound-for-pound, thanks to a group of generous supporters, up to Β£2,250!
For example
πGive Β£10 β It becomes Β£20!
πGive Β£20 β It becomes Β£40!
And so onβ¦
Click here to donate today!
https://www.justgiving.com/campaign/lilychristmas2025
01.12.2025 16:45 β π 3 π 1 π¬ 0 π 0
This βfundamentalβ study uncovers how directing pyruvate into mitochondria can shrink cells by shifting their metabolism away from building amino acids and proteins.
buff.ly/hFHjKy9
26.11.2025 16:15 β π 19 π 5 π¬ 0 π 0
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
24.11.2025 09:25 β π 1 π 0 π¬ 0 π 0
ποΈ 23 November: ADOA Awareness Day π
On Sunday 23 November itβs 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
20.11.2025 09:09 β π 2 π 0 π¬ 0 π 0
ποΈ Focus Speakers β Rita Horvath
π Curious to know who will be speaking at #euromit2026
β¨ Today, weβre introducing Rita Horvath.
π Stay tuned: every week for a month, new speakers will be featured.
#euromit2026 #speakers #mitochondria #angers #scienceconference
07.05.2025 10:18 β π 3 π 1 π¬ 0 π 0
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.
ποΈ Focus Speakers β Michal Minczuk
@mitogene.bsky.social
π Curious to know who will be speaking at #euromit2026 ?
β¨ Today, weβre introducing Michal Minczuk who will be taking the stage at the congress.
#euromit2026 #mitochondria #angers @univangers.bsky.social @ua-recherche.bsky.social
02.06.2025 08:15 β π 7 π 4 π¬ 0 π 0
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
12.11.2025 11:55 β π 0 π 0 π¬ 0 π 0
YouTube video by The Lily Foundation
The recipe for explaining how mitochondrial disease is diagnosed #mito #geneticdisorder #raredisease
A brilliant explainer from The Lily Foundation on the science behind genetic diagnosis in mitochondrial disease β featuring cake as a metaphor! π°
youtu.be/MCx4joZJtFY
#Mito #MitochondrialDisease #GeneticTesting #RareDisease #ClinicalResearch #TheLilyFoundation
07.11.2025 14:23 β π 4 π 0 π¬ 0 π 0
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.
17.10.2025 08:46 β π 4 π 1 π¬ 0 π 0
Congrats Michele! Great work! @jellevda.bsky.social @mrc-mbu.bsky.social @mbu-postdocs.bsky.social
10.10.2025 21:26 β π 1 π 0 π¬ 0 π 0
ποΈToday is World Sight Day β and weβre proud to reshare some incredible news for the mito community. Idebenone is now available for patients with LHON β a breakthrough that could help preserve vision and improve lives.
π Read Maryβs story to learn more: https://ow.ly/MZhL50X3wtH
09.10.2025 12:05 β π 1 π 1 π¬ 0 π 0
Seconded!!
09.10.2025 06:51 β π 0 π 0 π¬ 0 π 0
Congratulations to @lucialugut.bsky.social who passed her PhD with flying colours last week; and with no thesis corrections βΊοΈππ
08.10.2025 16:10 β π 5 π 2 π¬ 1 π 0
π¬ Supporting medical research into mitochondrial disease is at the heart of our mission.
Explore our past and current research projects - https://www.thelilyfoundation.org.uk/affected-by-mito/our-research/lily-funded-research-projects/
Together, weβre driving hope through science. π
06.10.2025 11:00 β π 3 π 1 π¬ 0 π 0
@lilyfoundation.bsky.social @ritahorvath.bsky.social @jellevda.bsky.social @mitowomen.bsky.social @camneuro.bsky.social @uclqsion.bsky.social @mitonewcastle.bsky.social @mrc-mbu.bsky.social @camneurodept.bsky.social @cambridge-scm.bsky.social @londonmito.bsky.social @needhamneuro.bsky.social
26.09.2025 15:14 β π 1 π 0 π¬ 0 π 0
Clinical Research Associate (Fixed Term)
This is a unique opportunity to carry out a period of clinical postdoctoral research focused on developing and validating new treatments and biomarkers for mitochondrial disorders, as part of a new
π’ We are recruiting a post-doctoral clinical research associate to join the @lifearc.bsky.social Centre for Rare #Mitochondrial Diseases, supported by @mdukcharity.bsky.social It's an exciting time in mito research! For further details and to apply visit: www.cam.ac.uk/jobs/clinica...
26.09.2025 15:07 β π 2 π 3 π¬ 1 π 0
Studying the mysteries that surround the genome of the cell's powerhouse
Interested in bioinformatics, healthy ageing, kidney & rare diseases, Shelties, books, & randomly weird facts...Professor of Molecular Epidemiology & Public Health
Euromit 2026, the international congress dedicated to mitochondrial diseases research will take place in #Angers, France from May 30 to June 4, 2026 : cutting-edge science, clinical updates and networking. Visit website : https://www.euromit2026.eu/
Working to reduce the burden of ill health through our world class primary care research and teaching. Established in 1997.
https://www.phpc.cam.ac.uk/research/departmental-research-units/primary-care-unit
PhD Student at University of Cambridge - Department of Mitochondrial Biology Unit and Clinical Neuroscience
We are led by Professor Roger Barker, for the last 25 years we have run both clinical and laboratory-based research, focused on neurodegenerative diseases Parkinsonβs disease and Huntingtonβs disease.
Associate Professor at University of Calgary studying mitochondria.
πππ©π€πππ€π£ππ§ππ in health, cardiovascular disease, & aging. PhD in mitochondrial physiology. Posts are my own opinions.
https://camflyclub.wordpress.com/
The Cambridge Fly Club is an initiative aiming to unite allΒ DrosophilaΒ scientists in Cambridge (UK). It brings together scientists from around 30 research groups from world leading institutes and departments in Cambridge.
A platform for life sciences. Publications, research protocols, news, events, jobs and more. Sign up at https://www.lifescience.net.
Biomedical Research Fellow | Mitochondrial diseases |
Microbiologist | Precision Medicine | Bioinformatics Analysis | AI/ML in drug development
Studying cellular #stress responses, particularly #senescence and its impact on #immune response, #ageing and #cancer, #tumorigenesis at Cancer Research UK CI βͺ@cruk-ci.bsky.socialβ¬, University of Cambridge βͺ@cam.ac.ukβ¬
Website: naritalab.com
We hope to be able to significantly impact the RD research landscape and improve the lives of those directly or indirectly affected by rare diseases.
The membership organisation of leading medical and health research charities in the UK.
www.amrc.org.uk
The UKβs leading research institute transforming the lives of people affected by neurodegenerative conditions. Principally funded by the Medical Research Council.
BBC Health Correspondent
Presenter | Producer @BBCNews
UK Medical Journalists Assn Award Winner
Royal Television Soc Journalist of the Year
Producer / Director: The Wahine Disaster
Nature Communications is an open access journal publishing high-quality research in all areas of the biological, physical, chemical, clinical, social, and Earth sciences.
www.nature.com/ncomms/
