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UK Masto - Support, Advocacy, Research

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Book NOW! for our Conference and AGM, January 22nd 2022
We are holding our 2021 Annual General Meeting and Conference virtually via Zoom on Saturday 22th, January 2022. Click here to register. We are excited to bring you outstanding speakers including: Dr Sarah Glover, Clinician and Researcher on Hereditary Alpha Tryptasaemia Dr Bethan Myers, Haematologist Dr Deepti Radia, Haematologist Dr Andrew Whyte, Allergist There will 

Clinician Virtual Training Course, rescheduled for March 18, 2022
The free virtual training course previously scheduled for January 21, 2022 has been moved to Friday March 18, 2022 due to COVID-related staffing policies currently in place.  Apologies for the change!  We hope that means that we will see all those who have already registered and new people as well!   If you are already 

Ketotifen tablets back in stock- October 22, 2021
Ketotifen (Zaditen) 1mg tablets are back in stock with Alloga, the UK distributors.  While it can take time for the product to travel to the pharmacies via wholesalers, pharmacies can order directly from Alloga and be invoiced by their usual wholesalers, which may speed up the process.
Findings from UKMasto Survey on COVID-19 Vaccinations in Mastocytosis Published in the Journal HemaSphere
Using a survey, we sought to capture the experience of people with mast cell diseases when having their COVID-19 vaccination, beginning in February 2021.  We understood that these patients and their doctors could be concerned about how well the vaccinations would be tolerated.  We are pleased to share a peer-reviewed letter published today in HemaSphere, 

Masto Family in West Sussex Featured in the News
Olivia is six and has recently been diagnosed with systemic mastocytosis after being diagnosed with cutaneous mastocytosis at the age of six months.  This weekend her aunts and her grandmother are running the Virtual London Marathon to raise money for The UK Mastocytosis Support Group.  Olivia’s mum, Charlotte Lane is a trustee of the charity 

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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Alana and son Jay’s story
  Jay is 22 months old and was diagnosed with Urticaria Pigmentosa when he was about 13 months old, although he has suffered with it from when he was a few days old. He has a rash all over his torso and legs most of the time and suffers from stomach cramps and loose stools. 

Carla and Family’s Story
I have two boys with mastocytosis, Alex 12 years old has Systemic Mastocytosis and was diagnosed at the age of two. He has an enlarged liver and spleen and a low platelet count. By the age of three and a half he was also diagnosed with an Immune Deficiency with a sub group IgA and 

Elaine’s Story
I am Elaine and I have had SM [systemic mastocytosis] for 3 years but it was only when I had been going to a dermatologist 9 years and now a new consultant. He did biopsy on my skin then sent me to Haematology, they did a bone marrow biopsy and SM was positive. I am 

Julian’s Story
My name is Julian, born in 1967 in Brussels, Belgium, but British by passport and heart, and leading a peripatetic life ever since. I consider myself one of the luckier ones of this group – I “only” have UP, a mild slightly annoying itching which is triggered if I take too much of any of 

Kirsten and daughter Maya’s Story
Maya, who has had UP [urticaria pigmentosa] since about 3 months, is now doing really well at 11, she has recently been getting better and better. As I have often said to other parents – there was an improvement in Maria’s Masto from when she was 3 – 4 but it was then very gradual, 


COVID-19 Vaccine Statement and Survey

For information please click here.



 

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