rare Archives

rare

2nd June 2019

The Diagnostic Odyssey – A Mother’s Experience

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

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 […]

19th November 2018

Rare Disease Day 2019

danjeffries Cambridge, CRDN, rare

It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively. Free to attend, this 2-day festival will shine a light on some successes and innovative solutions […]

7th March 2018

When Dan Met Lucy on Rare Disease Day 2018

Lucy McKay Uncategorised acromegaly, awareness, Clinical examination, doctor, endocrine, foundation doctors, med school, med student, medical, medical education, medical school, medical student, medicine, opthalmology, OSCE, rare, rare disease, rare disease day

VIDEO: Dan Jeffries, owner of two rare diseases and author of ‘Me, Myself & Eye’, interviewed M4RD Founder Lucy McKay. Watch the video to hear Dan’s interesting story of being diagnosed during an OSCE and to find out what M4RD is all about from the zebra’s mouth.