Thanks to the wonders of modern technology and an amazingly powerful online platform #ECRD2020 took place virtually on 14th & 15th May. The conference was organised to take place in Stockholm, but due to the ongoing COVID-19 pandemic, the conference was moved online by the organisers from Eurordis. This year’s European Conference on Rare Diseases […]
The Challenge For months Fizzy Keeble and her partner, Mike, have been training in preparation for this Saturday. The challenge? SwimRun Australia – a unique and challenging adventure sport where teams of two compete by alternating between running and swimming on a challenging course covering trails, beaches, ocean, cliffs, rocks, and paths. Teams must complete […]
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 […]
Jo McPherson News, raredisease, Uncategorised awareness, diagnosis, doctor, doctors in training, foundation doctors, medical education, medical school, medical student, rare disease, rare disease day 0
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. […]
Same But Different is starting the conversation about baby and child death with their newest exhibit ‘30% Project’. It raises awareness of the statistic that 30% of those diagnosed with a rare disease will die before their 5th birthday.
‘The Suspense is Killing Me’ is launched to help find answers for children suffering from rare or undiagnosed diseases.
Project Y’s mission is to find answers for children with rare diseases, helping to find answers for thousands of families who desperately need them. Project Y supports advancing initiatives such as the Undiagnosed Diseases Program, a groundbreaking program bringing together specialist doctors, scientists and technology to solve the most challenging medical mysteries. 500,000 Australian children […]
Earlier this year M4RD helped Childhood Tumour Trust (CTT) search for a doctor to attend the International Neurofibromatosis Conference in San Francisco this September. The successful applicant would also join CTT’s medical board as a volunteer medical advisor and represent the charity for at least two years. The M4RD team were excited to help CTT plan and […]
The most common of the Neurofibromatoses, Neurofibromatosis Type 1 (NF1) is a condition that leads to tumors growing on nerves alongside effects on other organs. It affects approximately 1 in 2700 births, and can be due to autosomal dominant inheritance from the parents or new mutations in the gene NF1 in the affected child.