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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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Belinda’s Story
I am Belinda, and I have been ill throughout my life (now we have realized that it was mastocytosis but hadn’t been aggravated like now). In summer 2004 I became really ill. My year was full of stress and anxiety and very hectic. My parents had split up in the new year, I had a 

Jason’s Story
I am 29 years old and am currently being seen by a consultant at a local hospital. Hopefully he will sort out an appointment with an SM [systemic mastocytosis] specialist soon. I first noticed the pink freckles appearing about 4 years ago and so went to the doctors where they told me it was acne. 

Heather’s Story
I am 59 and I was diagnosed with urticaria pigmentosa in 1985. I was given PUVA treatment which made little effect on the UP other than to make me sensitive to florescent light for about 48 hours. I have had episodes of classic migraine (headache, flashing lights, noise and sickness) which I thankfully no longer 

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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