A Puff of Smoke
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 […]
disease
30% Project: A Conversation About Baby and Child Death
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 […]
The Diagnostic Odyssey – A Mother’s Experience
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 […]
Neurofibromatosis Type 1
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.
Time To Think ‘Kawasaki Disease’
In this article, Sri Rambhatla reflects on one family’s experiences of Kawasaki Disease and reminds us of its clinical presentation, diagnosis and treatment. Srinivasa Rambhatla is an academic foundation doctor […]