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.
Medics4RareDiseases are excited to announce the launch of their new research project: The M4RD Red Flags Survey. The purpose of the survey is to find out what different rare diseases have in common during the time before diagnosis, a period often called ‘the diagnostic odyssey’. We need all UK based patient groups to take part. Read more to find out how…
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.