ABOUT US

Our Impact

Shaping policy, influencing guidance, and championing rare disease education at every level.

Medics for Rare Disease advocates for a single-discipline approach to rare disease education for all UK healthcare professionals.

To further our advocacy, we have:

  • Provided expert consultation on first NICE guidance for ‘Adrenal insufficiency: identification and management’ which aims to improve the treatment of adrenal insufficiency and the prevention and management of adrenal crisis
  • Assisted in shaping the Rare Disease Framework and implementing the subsequent action plans in partnership with the Department of Health and Social Care
  • Pioneered #ShowYourStripes – a successful and ongoing social media campaign for healthcare professionals to take part in on Rare Disease Day

“I had trained for 6 years, across five trusts and two universities and no-one had even mentioned rare disease before I came across Medics for Rare Disease.”

Dr Grace Knight

Our focus now is to increase the reach of the Rare Disease Day campaign and gain further support from different NHS organisations, training bodies and other key stakeholders, to unite under our mission to achieve earlier diagnoses by raising awareness of rare disease as one patient population with a unique profile of unmet needs.

Find out more about our latest activities on our News page.

Medics for Rare Disease defines excellence in rare disease medical training.

To support our aim of advancing rare disease education for medics and associated healthcare professionals, we have:

  • Conceptualised and created a unique, flexible online teaching resource for healthcare professionals in the form of Rare Disease 101 and the Medics for Rare Disease Learn platform
  • Provided training for the Royal Society of Medicine for 10 years
  • Achieved a tender with NHS England (which was extended)
  • Published the ‘Red Flags of Rare Diseases’ report and ‘Evaluation of RD101’ in the Orphanet Journal of Rare Diseases

At a recent RD101 face-to-face training session, the percentage of respondents able to define a rare disease as affecting fewer than 1 in 2000 people rose from 22% to 88% after the session! And the percentage of respondents who rated learning about rare conditions as important or very important rose from 59% to 96%!

Our primary goal now is to ensure Rare Disease 101 training is mandatory in undergraduate and Foundation Programme medical training. We will also be developing materials for GP Trainers to provide to doctors on the General Practice Vocational Training Scheme (GPVTS).

Medics for Rare Disease is building a network of Ambassadors that expands the reach of Rare Disease 101 training globally.

Medics for Rare Disease:

  • Partners with key organisations, companies and individuals to expand the reach of rare disease awareness across the UK and internationally
  • Are commissioners for the Lancet Global Rare Disease Commission
  • Network comprises healthcare professionals across the world, including GPs, paediatricians, medical students, nurses and other allied healthcare professionals
  • Are part of King’s Health Partners Rare Disease Network

Continuing to expand our network of collaborators, partners and Ambassadors nationally and internationally remains a key priority.