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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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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 

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 

Kelly and daughter Amber’s Story
I have 2 children one with mastocytosis, the cutaneous version. She is 18 months old and was diagnosed when she was about 6/7 months. I will be requesting Epipens, although Amber hasn’t shown any anaphylactic tendency just knowing it is possible I want to be prepared, this was all news to us! Also she has 

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 

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. 


COVID-19 Vaccine Statement and Survey

For information please click here.



 

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