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UK Masto - Support, Advocacy, Research

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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 

New supply of sodium cromoglycate capsules in stock
We are very pleased to share that there are now two new licensed sodium cromoglycate products that we hope will meet all or at least much of the demand over the next several months. The Department of Health and Social Care have informed us that during the week ending 17 September, Somex Pharmaceuticals will begin 

Midostaurin to Be Funded by NHS After Campaign by UKMasto and Leukaemia Care
The UK Mastocytosis Support Group and Leukaemia Care successfully campaign for patients with Advanced Systemic Mastocytosis (AdvSM) to access new treatment The National Institute for Health and Care Excellence (NICE) have today made recommendations for midostaurin to become an NHS treatment option for advanced systemic mastocytosis (AdvSM) patients in England. Advanced SM is used to 

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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Lorna’s Story
I was initially diagnosed with UP [urticaria pigmentosa] in 1987 at the age of 42. We had been on a hot holiday to Greece and I had rashes on my legs that did not disappear. My GP referred me to a dermatologist, who gave the diagnosis of UP after a biopsy of one of the 

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 

Gloria’s Story
I am a 70 year old. My first attack was 14 years ago. It started with diarrhoea, face flushing, breathlessness and anaphylaxis. My husband was with me, he phoned the paramedics and then applied CPR as I had stopped breathing. I was rushed to hospital and against all odds I was resuscitated. I spent 4 

Megan and son Clement’s Story
Clement was around 2 months old when his first spot appeared on his tummy. A few more started appearing on his tummy and back then when he was 5 months old we went to see a skin specialist who diagnosed UP [urticaria pigmentosa]. More spots appeared on his torso, also a few on his arms, 

Christopher’s Story
I have just turned 70. Urticaria Pigmentosa hit me 29 years ago – I do feel a bit of a fraud as so far I have had no really bad effects, as far as I know. All my body – except my face – is reasonably heavily spotted. I do get tired – but cannot 


COVID-19 Vaccine Statement and Survey

For information please click here.



 

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