UK Masto - Support, Advocacy, Research


COVID-19 Supermarket Letter
We know how difficult it has been for many of you to access safe foods throughout this period. We would like to invite you to join us, along with the Mast Cell Action, in contacting your local supermarket and ask for them to consider your needs during these difficult times. Please find below a downloadable 

Shielding and Exit plan
We are pleased to be able to share this document which has been created in collaboration with Mast Cell Action (https://www.mastcellaction.org) to help share what we currently know about government guidance on shielding vulnerable patients during the Covid-19 pandemic and to share suggestions and experiences to try to help make things easier during this difficult 

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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Janette and daughter Helen’s Story
Shortly after Helen was born we noticed spots on her bottom. These later spread to the whole of her torso, front and back, some down her legs and up to her neck. On a couple of occasions, mainly in shops when she got too hot, the spots would become red and angry-looking. I took her 

Judy’s Story
Seventeen and a half years ago when I was 57 I was admitted to hospital after having five spinal fractures in less than five months and as a consequence lost five inches in height. I was diagnosed with severe osteoporosis. During my month’s stay the doctors were concerned about my spots/rash on my thighs inner 

Sandra’s Story
I am 43 and first noticed spots on my arms about twelve years ago. These increased very gradually at first and were not recognised by a variety of GPs. I eventually asked for a referral to a dermatologist at my local hospital and was lucky enough to see someone who was able to diagnose UP 

Andrea’s Story
My name is Andrea and I developed the first signs of urticaria pigmentosa at about the age of 24 and I am now 43. I stopped going to see my consultant some years ago as it was simply a case of saying “Hello, keep taking the antihistamines and see you in 12 months time”. I 

Samantha’s Story
I have always been fair skinned with lots of freckles so didn’t take much notice when on holiday in an extremely hot Corfu in 1986 (aged 23), lots more “freckles” appeared at the tops of my legs. They stayed the same until pregnancy in my early 30’s. Shortly after my first child was born, severe 

COVID-19 Vaccine Statement and Survey

For information please click here.