RARE Revolution RARE Bite

https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=e0508b93-1cde-4785-b9ae-c36724bde55a&pnum=54 Skin-related manifestations of neurofibromatosis type 1 (NF1) are often viewed as cosmetic and superficial, yet tumours, malignancy risks and visible differences cut far deeper. And despite skin heavy diagnostic criteria and symptoms, dermatology, as a speciality, plays a limited role in the care of those with NF1. Vanessa Martin, founder and CEO of Childhood Tumour Trust, calls for increased equity for those with NF1 and greater recognition of the mental and psychological impact of living with this unpredictable rare disease.