‘The Suspense is Killing Me’ is launched to help find answers for children suffering from rare or undiagnosed diseases.

Jo Higgs daretothinkrare, disease, Family support, patient, raredisease, Research children, Family support, rare disease, undiagnosed 0

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 […]

2 June 2019

The Diagnostic Odyssey – A Mother’s Experience

Jo Higgs congenital, daretothinkrare, disease, interview, patient CSID, Deficiency, diagnosis, Diagnostic odyssey, Diet, Enzyme, Enzyme deficiency, Gastroenterology, Mother, Nutrition, rare, rare disease, Rare reality, Sugar 2

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 […]

25 February 2019

M4RD Get Animated with new Promotional Video

Lucy McKay daretothinkrare, medicalstudent, News, Video emotive, raredisease101, video, youtube 2

M4RD in conjunction with Emotive are proud to reveal their new promotional video – just in time for Rare Disease Day 2019!

‘The Suspense is Killing Me’ is launched to help find answers for children suffering from rare or undiagnosed diseases.

The Diagnostic Odyssey – A Mother’s Experience

M4RD Get Animated with new Promotional Video

Everything You Wanted to Know about Genomics but Were Afraid to Ask

The NF Conference

RAREsummit19

Pompe Preceptorship

The 33rd symposium: Cystic fibrosis in children and adults