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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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Sheila’s Story
History of masto and me: Odd pink freckles appeared on my thighs in my early thirties, no other symptoms. In my late forties I mentioned it to my GP as they had multiplied significantly. By now I was also getting hives/nettle rash when stressed (I had quite a stressy job). He referred me to 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 

Iris’s Story
I was diagnosed with Urticaria Pigmentosa in 1983 and things remained calm for most of the time except if I was in the sun, or having a hot shower. I was covered in Pigment marks on most of my body and limbs but not my face. This was till around 8 years ago and things 

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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