The Barts and The London Society for Rare Diseases
This pack has been developed to help groups of medical students spread the word about rare diseases in their medical schools. The Barts and The London Society for Rare Diseases (“BL Rare Diseases”) was formed in 2011 by a group of students interested in thinking outside the box and learning about diseases that are not necessarily taught at medical school.
Since our inception BL Rare Diseases has held four successful talks involving clinicians, researchers, patients and advocates. We held a day symposium entitled: “The Unusual Suspects: A day symposium on Rare Diseases” which was held at St Bartholomew’s Hospital in London. We brought together clinicians, patients and students to discuss rare diseases. One of the main purposes of the symposium was to attract medical students from all around the country to spread the word about rare diseases and to inspire other medical schools to hold similar events.
Our aim is to educate future doctors about diseases that might be rare but in total affect approximately 3.5 million people in the UK. We do not deny the mantra of “common things are common” but it does not mean that rare diseases do not exist. In the past the prognosis of many rare diseases was incredibly bleak – most are genetically inherited and there were no treatments available. However, recently huge advances have been made and there are now life-saving therapies available. Each day that patients go undiagnosed they are missing out on this treatment. We strongly believe that medical education needs to catch up with medical progress.
We believe it is vital that students hear from expert patients with rare diseases, to help them understand the struggle it can be to reach a diagnosis and how lonely it can be once you have arrived at one. We hope that through our events the doctors of tomorrow will make a difference to the journey of patients with rare diseases.
With the aid of this pack you and your colleagues can run similar events, with the aim being to try and spread awareness of rare diseases to all of the medical schools in the UK. We hope that a different medical school will be able to host the rare diseases symposium next year with the help of this pack and BL Rare Diseases.
And remember each rare disease may be rare but together they are common…