Resources for clinicians and medical students

Welcome to our directory for clinicians and medical students!

We’ve provided the following information to help you find the answers you need quickly so that you can get involved in our work and mission.

Beacon resources

If you’d like to learn more about rare diseases, visit our What are rare diseases? page now.

If you’d like to hear first-hand accounts of what it’s really like to live with a rare disease, we highly encourage you to listen to the Rarely Heard podcast. Visit the official Rarely Heard website now to listen to the rarely heard stories of those living with a rare condition.

External resources for medical students

Medics 4 Rare Diseases

Medics 4 Rare Diseases (M4RD) is driving an attitude change towards rare diseases amongst medical students and doctors in training. With over 7,000 rare diseases, it’s impossible to know about all of them. However, it is possible for doctors to:

  • Appreciate that rare diseases are collectively common
  • Recognise the exceptional challenges faced by patients with rare diseases

M4RD provides education in the Rare Disease field for medical students and doctors in training. Our ultimate aim is to improve the patient-doctor relationship and speed up the journey to diagnosis. Visit M4RD’s website to learn more!

Royal Society of Medicine (RSM)

The Royal Society of Medicine is one of the UK’s leading providers of continuing learning in healthcare. Their vision is ‘better healthcare for better lives’. They aim to achieve this by sharing learning and supporting innovation on the science, practice and organisation of medicine. Visit RSM’s website to learn more!

 

Global Genes

Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners.

The non-profit organization promotes the needs of the rare disease community. Global Genes’ mission is to eliminate the challenges of rare disease through public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare diseases. Visit Global Genes’ website to learn more!

 

The Castleman Disease Collaborative Network (CDCN)

For an example of a successful drug repurposing project lead by a medical student (now doctor), we highly encourage you to visit the Castleman Disease Collaborative Network (CDCN) website. The Castleman Disease Collaborative Network (CDCN) is a global initiative dedicated to accelerating research and treatment for Castleman disease (CD) to improve survival for all patients with CD.

They work to achieve this by facilitating collaboration among the global research community, mobilizing resources, strategically investing in high-impact research, and supporting patients and their loved ones.