Medics4RareDiseases (M4RD) is driving an attitude change towards rare disease amongst medical professionals.
7,000 rare diseases
With over 7,000 rare diseases, it’s impossible to know about all of them. However, it is possible for doctors to:
- Appreciate that rare diseases are collectively common, affecting 3.5 million people in the UK
- Help alleviate the exceptional challenges faced by patients living with a rare disease
Educating medical professionals
M4RD provides education about the relevance of rare disease to everyday clinical medicine and equips doctors to manage their patients effectively. Our ultimate aim is to have fundamental rare disease education included in undergraduate and postgraduate medical education in the UK.
We believe that asking doctors of the future to #daretothinkrare is fundamental to improving the experience of all rare disease patients and eliminating the diagnostic odyssey.
Rare disease 101
All healthcare professionals need to have an understanding of how many people are affected by rare diseases and what a huge impact having a rare disease has on patients and their families.
We often get asked about how to make teaching about rare diseases mandatory in the medical school curriculum. However, with over 7,000 rare diseases and an already packed medical curriculum, teaching about every rare disease is unfeasible.
We feel the more realistic solution is that medical students and doctors in training complete Rare disease 101, which we launched earlier this year. RD101 is a free, online and interactive learning platform to teach about the fundamental concepts and issues within rare disease and to equip medics in order to better manage their rare patients.
‘Rare Disease 101 is required in order to equip our medical professionals to step up for their rare patients,’ says Dr Lucy McKay, CEO M4RD.
In order to balance our aims with the needs of the target audience, it was important to the M4RD team that Rare Disease 101 not only explains the impact of living with a rare disease but also provides pragmatic tips for medical professionals. We demonstrate tools that are already at their fingertips (but they might not know of them yet). As well as coming up with new methods for approaching when to suspect someone has an underlying rare condition.
Working with patient advocacy groups
We also use our social media platforms to raise awareness of rare conditions with our medical audience via Mystery Disease Monday. This is a great way for medics to learn about rare conditions from those who understand them the best – patients and patient groups!
The Student Voice Prize
The patient group pairing scheme gives medical students, nurses and biological sciences undergraduates and masters students the chance to be paired with a rare disease patient group to learn first-hand about their condition and patient experience.
The scheme benefits patient groups because it allows them to share their stories and experiences with a doctor, nurse or scientist of tomorrow who may never have considered working with rare diseases before.