"It's #Haemochromatosis Awareness Week! Haemochromatosis is the UK's most common undiagnosed genetic condition. For info & advice with #IronOverload : bit.ly/4dRsXIN Our thanks to RARE Revolution Magazine for #MondayTakeover" Haemochromatosis UK

Great time so far @HealthySkin4All The other patient support groups have been great to meet. Also #BAD2024 thanks for catering for coeliacs! Behçet's UK LUPUSUK 💙 The ED Society #dermatology #RareDisease BHD Foundation Myrovlytis Trust

This morning spent at The Skin Genetics Group Clinical Meeting @HealthySkin4All #BAD2024 🧬🧬 so fascinating learning more about this area of research and clinical practice

Great talk William Fostier

It was interesting to learn more about Lupus from the lovely people at the Lupus UK psg stand at #BAD2024 @HealthySkin4All LUPUSUK 💙

Looking forward to this!

Share your experience in IQVIA study on rare kidney disease! This study is to understand the experiences of patients and carers regarding diagnosis and care and treatment pathways. Email [email protected] to find out more!

On a personal life update we have recently moved to live by the sea on the west coast of Scotland and it is blooming beautiful 🥹

Previous research shows that T cells & a special molecule called GD2-specific antibody can work together to identify osteosarcoma cells. One study investigates this mechanism by giving treatment to patients with osteosarcoma. Read our blog to learn more: osteosarcomanow.org/targeting-oste…

Read one of our recent blogs on Cambridge Pride! 🤩 The event was a great opportunity to talk about our work, rare diseases and the inequalities that the LGBTQ+ community face in the healthcare system. 🔗 ow.ly/1M3S50SMZW2

Did you know? The European Lung Foundation (ELF) was founded by ERS in 2000 & works internationally to bring patients & the public together with healthcare professionals, to improve lung health & advance diagnosis, treatment & care. Learn more about ELF: europeanlung.org/en/

We must #FightClimateChange to maintain lung health globally.   Plant pollen, wildfires and extreme heat can accelerate climate change and worsen symptoms for those with lung conditions.   Access our #HealthyLungsforLife resources to learn more: europeanlung.org/en/information…

The importance of mental health cannot be overstated, especially for populations that are already considered vulnerable. Our Mental Health Partnership Network aims to reduce the accumulated impact of rare diseases on mental health among our community. 🧠 go.eurordis.org/AyYZs8

You can read all about the ERN GENTURIS European clinical guidelines for BHD Syndrome here, we have written a patient friendly overview thebhdfoundation.org/blog/434-ern-g… #Genetics #RareDisease #PatientCare #BHDSyndrome #Clinical #MedicalCare Neil Rajan

#EPAP can help you understand how to become better informed about a condition and improve the care of people living with it. EPAP is available in 8 languages, so it is easy to get involved. Improve healthcare today: europeanlung.org/en/get-involve…

Published today, Lord Darzi's NHS Report is welcome and will drive Wes Streeting’s NHS reform over the next 10 years. The 3.5 million people in the UK affected by genetic, rare and undiagnosed conditions need the NHS to be fixed, both for their immediate care and diagnosis needs.

Today is Genetic Counsellor Awareness Day. Genetic Counsellors are an essential part of the clinical team, offering guidance and support to patients. Wondering what it means to be a genetic counsellor? Read our latest blog: ow.ly/OmAl50U6L1S #GCAwarenessDay

Today is Blue Monday. So we thought we would introduce the office pups to bring some happiness to your day. They keep the blues away and the staff team happy. If you are struggling with the mental health aspect of a rare disease visit lght.ly/7bmga6i Rareminds