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. […]
About Jo McPherson
Posts by Jo McPherson:
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
‘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 […]
Jo McPherson congenital, daretothinkrare, disease, interview, patient CSID, Deficiency, diagnosis, Diagnostic odyssey, Diet, Enzyme, Enzyme deficiency, Gastroenterology, Mother, Nutrition, rare, rare disease, Rare reality, Sugar 3
The diagnostic odyssey is a term used to describe the long and arduous journey that many rare disease patients find themselves on in pursuit of a diagnosis. The charity, Rare Disease UK, estimate that a patient with a rare disease will wait an average of four years for a diagnosis and be given an average […]
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.