UCL Great Ormond Street Institute of Child Health has responded to the considerable anxiety and confusion among many people living with rare diseases about their level of risk from COVID-19 and the precautions they should take. For patients A team of clinical genetics doctors working in collaboration with the British Society for Genetic Medicine, the Clinical Genetics Society and Aimes (a healthcare IT […]
People living with a rare disease have the right to reach their highest potential of well-being; join us online for ECRD 2020 to take part in discussions to inform and build the future ecosystem for rare disease policies and services.
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 […]
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 […]
This unique and multi-specialist event will look at and teach paediatricians how to be vigilant and confident when diagnosing masked and irrelevant signs and symptoms of illness or disease.
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 […]
‘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 […]