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UK Masto - Support, Advocacy, Research


Vision for UK Masto:

To help deliver a cure for Mast Cell Diseases including mastocytosis and mast cell activation syndromes, and ensure all those with these diseases receive early and correct diagnoses, optimal treatment, and the emotional support they need.

Goals of UK Masto:

To support Mast Cell Disease patients so they can better understand their disease; to be the patients’ voice as advocates with all key stakeholders; and to be lead proponents and supporters of world class research into all forms of Mast Cell Disease; delivered through a world-class charity.

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Lorna’s Story
I was initially diagnosed with UP [urticaria pigmentosa] in 1987 at the age of 42. We had been on a hot holiday to Greece and I had rashes on my legs that did not disappear. My GP referred me to a dermatologist, who gave the diagnosis of UP after a biopsy of one of the 

Katie and daughter Lara’s Story
Lara (who is now nearly 16) had the 50 pence sized, fluid filled blisters on her head when she was just under 1 year old. We were fortunate to be referred to a hospital, where it was decided that she had Urticaria Pigmentosa and Mastocytosis and gave us two Epipens [epinephrine] and prescriptions for ketotifen 

Hayley and son Mark’s Story
Our son Mark has Cutaneous Mastocytosis. I guess he is pretty rare as only about one in 400,000 – 500,000 in the UK has this condition. Sounds quite cool but actually it kinda’ sucks as it took many months and wrong diagnoses to figure out why our son is so “spotty” and what caused his 

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Member Conference and AGM


10th November is our member Conference and AGM at Jury’s Inn, Hinckley from 10.00 to 17.00. We look forward to seeing you all there.

Register here

Download Agenda