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Today, there are around 3.5 million people in the UK living with rare disease – roughly equivalent to the number of people living with or after cancer.
A lack of confidence in recognising when a rare disease may be present can lead to patients being passed between specialties without clear answers for many years. Years of uncertainty often puts individuals and families under significant emotional and financial strain.
People living with rare disease rank the lack of awareness amongst healthcare professionals amongst the top three factors that negatively impact their mental wellbeing.
Even when someone has a diagnosis the difficulties continue because most rare conditions are poorly supported by the NHS leaving people not knowing where to turn for help and information.
However there are many ways you can support your rare disease patients if you know where to look and follow some simple guidance!
We can help you make your clinical practice Rare Aware today with our course, Rare Disease 101. No healthcare professional can be an expert on thousands of unique rare diseases. However, by understanding the common themes that make up the rare disease lived experience, healthcare professionals can be prepared to deliver quality holistic care to individuals and families impacted by rare disease.
Recognising the lack of dedicated rare disease education within medical training, we created Rare Disease 101 – a unique e-learning course covering the fundamentals of rare disease for doctors. By approaching rare disease as one big group, we equip you with the tools to make your care ‘Rare Aware’ – without needing to be an expert in thousands of conditions!
“Rare Disease 101 was an excellent course that was highly accessible, covered most/all essential concepts, and was just the right length. Definitely recommended and a great initiative to start addressing an important gap.”
Sign up for Rare Disease 101 online for free – and complete it at your own pace! By the end of the course you’ll understand what it means to live with a rare condition, how to play your part in reducing the long diagnostic journey that many patients experience, and how to deliver quality care before, during and after diagnosis. And when a diagnosis isn’t possible, you’ll learn that healthcare professionals can still play a vital role in coordinating care, signposting support and validating their patient’s experience.
You’ll also receive a certificate of completion for your portfolio.
We’re delighted to be able to offer live Rare Disease 101 medical training sessions to medical students and doctors based in the UK.
By attending our live medical training sessions, you’ll learn about the basics of rare disease and hear directly from a keynote guest about their own lived experiences. We deliver the sessions in-person or online, depending on your needs and preferences.
Emerging research from Medics for Rare Disease highlights significant gaps in undergraduate medical education on rare disease. Teaching is inconsistently delivered across medical schools, and student awareness of rare conditions does not consistently improve as they advance through their studies. Importantly, many students report feeling unprepared to recognise and support their rare disease patients.
This shows that medics need opportunities to learn about rare disease from the very start of their medical careers. Join universities across the country – like Aston University and Swansea University – and make a medical training request today.
It’s not just medical students who feel underprepared – research shows that many qualified doctors also lack confidence in rare disease.
That’s why we deliver tailored Rare Disease 101 training to specialty trainees, like these GP trainees in Birmingham!
Want us to visit your team next? Get in touch!
Whilst we originally developed Rare Disease 101 for doctors practicing in the UK, a version has subsequently been adapted for doctors working the Australian healthcare system. That’s not all – we’ll be launching Rare Disease 101 for Nurses in 2025! Join our mailing list (hyperlink) to stay up-to-date with all things Rare Disease 101, and to be the first to hear about live medical training opportunities.
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