We’re working with UCL to find someone to help develop a patient registry for BBS UCL are setting up a professional registry for people in the UK with the rare genetic condition Bardet-Biedl syndrome (BBS). There are around 500 people with the condition in the UK and many of them attend the national BBS clinics in London […]
written by Dr Thomas Dunne What is Spinal Muscular Atrophy? Spinal Muscular Atrophy (SMA) is a rare genetic condition that causes progressive weakness and wasting of the muscles. It is a spectrum of conditions most commonly caused by a gene defect on chromosome 5q called the ‘survival motor neuron gene 1’, referred to as ‘SMN1’. […]
emotive Reviews ‘The Unusual Suspects’ During the past year M4RD has been working closely with emotive – an independent, award winning global healthcare communications agency – who have helped us to not only rebrand but also worked with us pro-bono on strategy and awareness raising activities and so it was an absolute pleasure to have […]
Student Voice Prize 2019 Last month the winning essays from the Student Voice Prize 2019 were published in celebration of Rare Disease Day 2020! You can read all of them in full by following the links below and read the shortened runner-up blogs as part of the BMC’s On Medicine blog. The overall winner has been published […]
On this rare day take time to listen to a patient story and decide what you will do to make a difference to 300 million people living worldwide with a rare disease #DareToThinkRare On 29 February 2020 – a rare day indeed – we mark the thirteenth international Rare Disease Day coordinated annually by EURORDIS. On and around […]
Medical Students asked to “Think Rare” Rare diseases affect approximately 350 million people worldwide, yet they are some of the most difficult conditions to diagnose. Despite the number of people affected and the challenge they pose for clinicians, the rarity of each individual condition means that little time is dedicated to them during medical school. […]
In September 2019 Medics4RareDiseases launched new branding with the help of healthcare communications agency emotive We have always wanted to keep our brand approachable while at the same time honouring the seriousness and importance of our mission. We believe our new brand will help us to do this Lucy McKay, CEO M4RD The new Medics4RareDiseases […]
Sarah Lippett spent eleven years suffering with symptoms from an unknown condition, until she was diagnosed with the rare disease, Moyamoya, at the age of 17. This November she is launching her beautiful graphic memoir, A Puff of Smoke, which tells her story using the power of the sequential narrative. It took eleven years, my […]
We are delighted to be working with the CSF Leak Association who are currently offering a bursary to support a UK-based junior doctor to travel to, and attend, the 3rd annual Intacranial Hypotension Symposium on 8th February 2020 in Los Angeles.
Each year the British Paediatric Surveillance Unit (BPSU) invite paediatricians planning a surveillance study to apply for this bursary. The successful applicant receives a free slot on the BPSU Orange Card and a stipend towards their training needs. The 2019-20 application period is now open, with a deadline of Friday, 11 October. https://www.rcpch.ac.uk/education-careers/fellowships-and-prizes/bpsu-sir-peter-tizard-research-bursary
