Medics For Rare Disease. Excellence in Rare Disease Training.
3.5 million people in the UK live with a rare disease, the same number as those living with cancer.
People with rare disease wait an average of five years to reach a diagnosis. However the vast majority of healthcare professionals will never receive any dedicated rare disease training.
Medics For Rare Disease’s mission is to shape a medical profession that can provide people living with rare conditions a timely diagnosis and excellent care.
There are over 6000 rare diseases and it is not possible to know about all of them. However, different rare diseases cause similar patterns of healthcare challenges and people living with rare conditions report similar experiences. By understanding this and becoming ‘Rare Aware’, doctors can greatly improve the lives of this large patient group and even save young lives.
Medics for Rare Disease advocates for making the healthcare system ‘Rare Aware’ and integrating a Rare Aware approach to medical training. We have been building a global network of Rare Aware healthcare professionals for over ten years who understand and advocate for this approach to clinical practice.
Our vision is of equitable healthcare for everyone. The Medics for Rare Disease approach to clinical training and practice ensures that everybody can receive compassionate, safe and informed healthcare – no matter how rare their condition is.
LISTEN
Listen to real stories
Become Rare Aware – when and how your schedule allows!
People living with rare disease often don’t feel listened to or believed by their doctors. This causes loss of hope, distrust in the healthcare system and, in some cases, avoidable tragedy. We believe that the journey to becoming Rare Aware starts by listening to the real life experiences of this incredibly resilient and hopeful community.
☑️ Discussions that challenge and entertain
☑️ Real life and unique personal stories
☑️ Expert guidance and reflections
LEARN
Learn the basics and beyond
Rare Aware training that transforms your medical practice.
Turn your awareness into Rare Aware clinical practice through our Rare Disease 101 training. We provide free e-learning courses designed to build your knowledge and clinical confidence. From basics of managing rare disease patients in your practice to more specialised topics.
☑️ 900+ medical professionals trained
☑️ Real life and unique personal stories
☑️ Expert guidance and reflections
☑️ Self-paced online learning
ADVOCATE
Become a Rare Aware Advocate
Lead change in your community.
Connect with peers, share knowledge, and champion Rare Aware clinical training and practice. Be part of the movement transforming the medical profession globally.
☑️ Ambassador Programme
☑️ Networking opportunities
☑️ Speaking opportunities
Stay Ahead: Recent Insights on Rare Aware medical practice
Medics for Rare Disease – providing rare disease training, free to all medical professionals in the UK
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