I am number 17 campaign
This week changemaker David Rose speaks with our CEO Lucy about what it is like to live with the ultra-rare disease occipital horn syndrome, advocacy efforts and the I am number 17 […]
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New Online Tool for Assessing COVID-19 Risk in People With Rare Genetics Diseases
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 […]
Winner of Student Voice Prize 2019 Announced
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 […]
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 […]
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 […]
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 […]