Rare Disease Patients Need you. Here’s How.

In an ideal world, all healthcare professionals would have an understanding of how many people are affected by rare diseases and what a huge impact having a rare disease has on patients and their families.

We often get asked about how to make teaching about rare diseases mandatory in the medical school curriculum. However with over 7000 rare diseases and an already packed medical curriculum, teaching about every rare disease is unfeasible.

We feel the more realistic solution is that medical students and doctors in training are provided “Rare Disease 101” – what are rare diseases, who do they affect and how can rare disease patients be helped by their doctor? We do this through events, The M4RD Ambassador Programme, social media, our website and our e-newsletter.

If you’re a medical student or doctor in training here’s how you can get involved:

  • Attend our annual symposium | Organised with The Medical Genetics Section of The Royal Society of Medicine, this annual event is a great way to learn about M4RD and rare diseases in everyday medicine. Our next symposium is on 20th February 2019.

  • Organise your own rare disease event | Whether this is at your medical school or hospital – we can suggest topics, help you find speakers and advertise for you.

  • Consider choosing a rare disease talk for your speciality conference | We have some amazing speakers who will be more than happy to share their perspective

  • Peer to Peer Teaching | From medical students to GP trainees, we all have to do it, so why not learn about something different but relevant – “Rare Disease 101” could be the answer!

  • Competitions | Every year we collaborate with the charity Findacure to bring you The Student Voice Essay Competition with fantastic prizes at stake.

  • Become an M4RD Ambassador | If you like what we do and you want to spread the word more about rare diseases you can become an ambassador (this is currently a pilot programme and all places are full). Please sign up to our e-newsletter to find out when new applications are being accepted.

If would like to help us with our mission, please get in touch.

We would love to hear from medical students to consultants and everyone in between

Take a look at some of the groups we've worked with...

  • BirminghamThis medical student society was formed in 2016 and works in collaboration with Birmingham Children’s Hospital. They have organised events ranging from small extra-curricular lectures to an impressive national Rare Disease Training Day in 2017. They also volunteer in their spare time for The Birmingham Children’s Hospital Charity.

    Their recent Rare Disease Training Day featured talks about 100K Genome Project, The Diagnostic Odyssey and a patient’s experience of using art to help her live with two rare diseases.

  • S4RD+CambridgeFormed in 2016 this medical student society has organised a number of rare disease events. They have worked with The Cambridge Rare Disease Network and Cambridge Biomedical Research Centre. Some of their members have spoken at rare disease event. 

    One member, Rebecca Nunn, won The Findacure Student Voice Essay in 2017 and spoke at our annual symposium at The Royal Society of Medicine in May 2017. Click here to see her recent interview for Rare Disease Day by Comradis, a rare disease communications agency.

  • King’s collegeThis new society has hit the ground running with lots of events already in the pipeline. Their aim is to promote the specialty of Clinical Genetics in the medical student community of KCL. And how can you love clinical genetics without loving rare diseases?!

    They do this work through guest lectures, providing revision materials to medical students and organising social events. They also have a very active instagram account so check them out now. Also follow them on Facebook and visit their website.

    Next rare disease event is 3rd December 2018. Find out more here.

    M4RD hope to collaborate with this group in March 2019. Make sure you’re signed up to our newsletter so you don’t miss out.

  • Manchester UniversityWe are so excited to work with Manchester University’s MUMPS group for the first time this year. This society runs events and provides resources for medical students who wish to pursue a career in paediatrics and child health. They understand the huge relevance of rare diseases in this specialty and this year plan to shine a spotlight on rare diseases at their annual conference. For more information visit their website or their Facebook page.

  • McGillThe McGill Rare Disease Interest Group (rareDIG), founded in September 2017, is the first medical student-run rare disease group in Canada and the third such group in North America.

    We aim to improve the care of patients with rare diseases by sensitising medical trainees. Our goals are to encourage medical students to understand the challenges patients with rare diseases face and adopt attitudes to reduce inequities faced by rare patients; spread awareness of rare diseases among medical students and the general public; create opportunities for patients to share experiences with future medical professionals; and encourage medical students at other universities to develop similar rare disease groups. 

    Our activities include:

    • patient perspective series

    • journal clubs

    • skill-building workshops

    • shadowing experiences

    • writing opportunities

    Additionally, rareDIG’s Humans of Rare Disease project and Rare Disease Day, impact the broader community. Visit their website for more information.

  • UCL+Medics+4+Rare+DiseasesMedical Students at UCL and our team have been working together since 2014 when Sam Audet (graduating this year) helped organise The Unusual Suspects: An Afternoon of Rare Diseases at The Royal Society of Medicine. The group are in the process of becoming an official student society and holding an event at the beginning of the next academic year. Natacha will be taking over as president and she is joined by Simon who was a runner up in the Findacure Student Voice Essay Competition 2017. 

    To find out more or if you have an enquiry please don’t hesitate to get in touch using the contact page. Or visit their Facebook group here.

  • UWAMedical students at UWA have been raising awareness of rare diseases since 2016. They have produced infograms, produced engaging videos and run local events. Our founder, Lucy, even produced a video about our work for them to play in a medical school lecture!

    They have strong links with The Undiagnosed Disease Programme, WA (UDP-WA). This programme is the first of it’s type in the country and it aims to provide diagnoses to people with undiagnosed complex and long-term conditions. 

    To find out more or if you have an enquiry please don’t hesitate to get in touch using the contact page. Or visit their Facebook group here.