Rare Disease 101
Today Medics4RareDiseases has realised a long-term goal: we have created Rare Disease 101 training for medical professionals. RD101 is an online and interactive education module created for medical professionals by M4RD with the aim of reducing the diagnostic odyssey and improving the rare patient experience.
Medical education can no longer skim over rare disease because of a perceived irrelevance. A patient group of 3.5 million people cannot be left off the medical curricula.Dr Lucy McKay – CEO of M4RD
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.
Take a sneak peek
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.
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).
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
RD101 is pre-launching today in order for the authors to check it all over in its final form and the whole module will be available on the M4RD website in early 2021. Join our mailing list to be kept up to date.
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
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