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Rare Disease 101 - the first cross-rare disease course for healthcare professionals

Dr Lucy McKay, CEO of the charity Medics4Rare Diseases tells us why their new educational module – Rare Disease 101 - should be essential for all healthcare professionals.

What is Rare Disease 101?

Rare Disease 101 is an online and interactive education module for medical professionals, which aims to reduce the Diagnostic Odyssey rare disease patients face and improve the rare patient experience in healthcare.

Why’s it important for medical professionals to learn about rare diseases?

A patient group of 3.5 million people cannot be left off the medical curricula. 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. Medics4RareDiseases is providing the model with which to deliver this education.

How can medical professionals learn about more than 7000 rare diseases?

They can’t, but they can understand the unique support that people living with rare diseases commonly need from the medical profession regardless of which rare disease they have.

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.

What will medical professionals learn on Rare Disease 101?

Too much to list here! Among other things, they will be able to communicate to colleagues that rare disease is relevant to mainstream medicine, recognise when someone might have an undiagnosed rare disease, 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 to facilitate the patient journey through healthcare and prepare for the possibilities ahead in terms of diagnostics and treatment.

How did you get involved in setting up Rare Disease 101?

I was a rare disease advocate long before I was a doctor. My eldest brother was affected by MPS II and died before I was born. Not long after his death, my mother founded the MPS Society and I grew up alongside the patient group. Our family life really revolved around rare disease and the impact it has on people and communities. So when I went to medical school I was surprised by how little attention rare diseases received, considering how great the challenges are in this area.
Medics4RareDiseases has a strategy to equip the medical profession with the knowledge and skills needed to understand rare disease as a whole, so that doctors can apply these skills to whoever enters their consultation room.

How long will the course take?

The course is interactive and contains numerous links directing users to other resources, case studies, articles, research etc. So it is hard to give an average time. If someone sat and took the course without much diversion it would amount to 2 hours of content.

What would you say to anyone who may not be convinced to sign up?

In many ways Rare Disease 101 has been in the making for years as we have listened to and learned from those with rare diseases and other RD advocates. The unique position of M4RD is that myself and two of the Trustees are trained UK doctors so they understand the medical education system and the huge pressures the medical profession is under on a daily basis. Using this experience we have thought of how we can deliver the important messages in a way that is useful to medical professionals.
Every medical professional wants to advocate for their patients, and do whatever they can to improve their quality of life. Rare Disease 101 will help them do this.
1 in 17 people will be affected by a rare disease in their lifetime so we all need the medical profession to #daretothinkrare.

Where can medical professionals sign up?

Go to www.m4rd.org, create a free account and get started.

The creation of Rare Disease 101 was made possible by sponsorship and grants from the following companies in 2020: Alexion, Amicus Therapeutics, Sanofi Genzyme and SOBI, as well as donations from BioMarin, Takeda and Ultragenyx. M4RD is grateful for this support.

M4RD is operated independently from these companies and they have no editorial control over M4RD’s contents or activities. For more information please visit www.m4rd.org/sponsors

While one doctor can't know about every rare disease, they can learn about the common patient experience of the diagnostic odyssey and the common challenges faced by those living with rare diseases. Lucy McKay, CEO of Medics4RareDiseases
  • Rare diseases

Last modified: 20 September 2023

Last reviewed: 20 September 2023