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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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Stella’s Story
I first noticed my UP in about ‘99 – after numerous visits to the GPs I decided I would like them to refer me. I eventually saw a Dermatologist in March 2004, she biopsied me and couldn’t be certain what I had so I was then seen at the local hospital. After some discussion amongst 

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 

Sylvia’s Story
I had various strange symptoms when I was young including extreme urticaria in sunlight and swelling of the lips and tingling when I had hot drinks. Oddly both these fizzled out in my 20s though I am still not very well in hot weather. I have an extreme wasp allergy and having been de-sensitized and 

Kylie and daughter Lucia’s Story
I’m Kylie and we have three daughters, my youngest Lucia is aged 7 months. Here is a bit about Lucia’s condition. Lucia was about 4 months old when she was diagnosed with Urticaria Pigmentosa, she had the spots on her body for about 2 months beforehand but the GP had no idea what they were 

Hilary’s Story
I am Hilary, aged 58. I believe my UP began to appear around the year 2000, though it took four years and three different GPs before referral to a dermatologist who made the diagnosis in 2004. I hadn’t realised that the lumps that were coming up when I was in bed, after a shower or 


COVID-19 Vaccine Statement and Survey

For information please click here.



 

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