Rare Disease 101
Today Medics4RareDiseases has launched its online, interactive e-learning platform dedicated to teaching medics the fundamentals of rare disease and help them manage both their undiagnosed and diagnosed patients. You can access it here or via the LEARN section of the M4RD navigation bar.
Rare Disease 101 is required in order to equip our medical profession to step up for their rare patients! We believe that asking the doctors of the future to #DareToThinkRare is fundamental to reducing the diagnostic odyssey and improving the patient experience.Dr Lucy McKay – CEO of M4RD
Rare diseases pose challenges for medical education due to their low prevalence and the resulting lack of knowledge by society and healthcare providers. RD101 aims to tackle this obstacle by concentrating on the shared experiences of living with a rare disease. People with very different rare diseases often report facing remarkably similar challenges.
A doctor cannot know about 7000 rare diseases but they can understand the common challenges faced by people with rare diseases.
Pragmatic tips for doctors
Rare Disease 101 is about the basics of rare disease. The kind of information that would not need to be explained at a rare disease conference but that some medical professionals may not be aware of. It has been in the making for years as we have listened to and learned from those with rare diseases and RD advocates, while at the same time understanding the medical education system and the huge pressures the medical profession is under on a daily basis.
This is the first medical education module of its type and is just the beginning of the change needed to be seen in healthcare in order to deliver the best patient outcomes.M4RD Team
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 yet). As well as coming up with new methods for approaching when to suspect someone has an underlying rare condition. The video below is a case study used in Lesson 4 in which we propose a THINK RARE, THINK AND, THINK AGAIN method. Matthew and Charlotte Parkinson’s story is the THINK AND case study and demonstrates the importance of putting all the puzzle pieces together.
Lesson 1 of Rare Disease 101 covers the basics. The numbers you need to know. We think that presenting the numbers to medics is important for them to start thinking rare. If you’ve been repeatedly told “common things are common” and have not been provided basic rare disease training, how you can be expected to support your patients?
After completing Lesson 1 we want you to be thinking ‘How did I not know this?’
After completing Rare Disease 101, whilst you won’t understand the details of every rare disease, you will be able to:
- Communicate to your colleagues that rare disease is relevant to mainstream medicine
- Recognise when someone might have an undiagnosed rare disease
- Quantify the cost of being undiagnosed and the benefit of having a diagnosis
- Appreciate the impact of having a rare disease on the patient and their family
- List trusted places to go for accurate information about rare disease
- Understand how you can facilitate the patient’s journey through healthcare
- Rise to the challenge of coordinating your patient’s care
- Support and be supported by patient advocacy groups
- Prepare yourself for the possibilities ahead in terms of diagnostics and treatment
The M4RD team enlisted experts from throughout the rare disease community – with different perspectives – to help author the module and have tried to include or signpost to as many stories, examples, tools, websites, knowledge sources and images from the wonderful rare disease world as possible.
RD101 would not be here without its authors, contributors and all of the rare disease community who are so generous with sharing their personal stories and expertise. And thank you to the M4RD 2020 sponsors whose support has made this possible!Dr Lucy McKay, CEO of M4RD
The creation of Rare Disease 101 was made possible by sponsorship and grants from the following companies in 2020. M4RD is grateful for this support. To find out about the M4RD 2021 sponsors and how M4RD works with commercial companies please go to the Sponsors Page.