16th February 2021

Today Medics4RareDiseases launches its new ​Rare Disease 101 (#RD101)​ - a first-of-its-kind educational module, realising a long-awaited goal in rare disease patient care.

ADSHG are delighted to be featured in the RD101 module explaining more about how patient advocacy groups can support medical professionals. Read on to find out more about the amazing RD101 platform, as well as more about how the ADSHG first connected with M4RD and our #MysteryDiseaseMonday! 

Developed by the charity, Medics4RareDiseases, with input from global experts, the Rare Disease 101 training for medical professionals, is an online and interactive education module which aims to reduce the Diagnostic Odyssey and whilst improving the rare patient experience.

Dr Lucy McKay – CEO of Medics4RareDiseases​, comments:

“Thanks to Rare Disease 101, medical educators 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 and Medics4RareDiseases providing the model with which to deliver this education.”

Rare Disease 101 addresses the basics of rare disease and the shared challenges that people with rare diseases face, especially when accessing healthcare. It includes information that the average medical professional may not be aware of, with many stories, examples, tools, websites, knowledge sources and images from the rare disease community.

The ADSHG are delighted to be featured in section 8 of the Rare Disease 101 module: "Support and be supported by patient advocacy groups". Our aim at the ADSHG is to increase medical awareness alongside providing information and resources for our medical community which they can easily access to support their patients with Addison's disease and adrenal insufficiency. 

Speaking with Dr Lucy McKay - CEO of Medics4RareDiseases, she comments:

"Rare Disease 101 is just the start of a medical professional's education in rare disease. We are opening the door to an amazing community of experts and therefore it's important we highlight examples of good practice within this community. ADSHG's website has clearly been designed with medics in mind as well as patients and it's M4RD's pleasure to use this example to demonstrate to doctors how patient advocacy groups can support them"

The ADSHG first became involved with Medics4RareDiseases in October 2020. The two organisations initially collaborated to feature Addison's disease on the M4RD series #MysteryDiseaseMonday over on Instagram. #MysteryDiseaseMonday is where M4RD raise awareness around a rare condition, adding to their Instagram story throughout the day with posts that have a clinical focus. You can catch up on ADSHG's #MysteryDiseaseMonday over on our Instagram Stories Highlight 'Medic 4 Rare' or watch the video on Medic's 4 Rare Diseases website here.

Rare Disease 101

The new module has been in development for years enabling significant input from those with rare diseases and rare disease advocates that M4RD have worked with over time. With practising GPs on the M4RD team they also understand the medical education system and the huge pressures the medical profession is under on a daily basis. As a result, Rare Disease 101 not only explains the impact of living with a rare disease but also provides pragmatic tips for medical professionals and highlights tools that are readily available (but medical professionals might not know of yet).

Rare Disease 101 is free to use by healthcare professionals and is available now via https://learn.m4rd.org/ 

Learning Objectives

After completing Rare Disease 101, medical professionals will be able to:

  1. Communicate to colleagues that rare disease is relevant to mainstream medicine
  2. Recognise when someone might have an undiagnosed rare disease
  3. Quantify the cost of being undiagnosed and the benefit of having a diagnosis
  4. Appreciate the impact of having a rare disease on the patient and their family
  5. List trusted places to go for accurate information about rare disease
  6. Understand how to facilitate the patient journey through healthcare
  7. Rise to the challenge of coordinating patient’s care
  8. Support and be supported by patient advocacy groups
  9. Prepare for the possibilities ahead in terms of diagnostics and treatment

Dr Lucy McKay, CEO of Medics4RareDiseases, explains:

“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” 

“The new UK Rare Diseases Framework was published last month by the Department of Health and Social Care and one of its four priorities is to increase healthcare professional awareness of rare disease. This has to start with undergraduate and postgraduate medical education. You cannot expect change to be implemented when those you want to implement it are unaware of the problem you’re trying to solve”. ​

Congratulation to Dr Lucy and the whole M4RD team!

Rare Disease 101 is free to use by healthcare professionals and is available now via https://learn.m4rd.org/