Tuesday, November 29th, 2022

MAKE YOUR VOICE HEARD!!! Surveys for patients and physicians

Systemic Mastocytosis (SM) patients and their physicians in the UK (and soon, elsewhere in Europe), please participate in this groundbreaking survey on the patient experience with all forms of SM, the burden it causes, and our unmet needs! We are excited to learn more about how patients experience life with SM– and the data can 

Tuesday, January 4th, 2022

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 

Wednesday, December 1st, 2021

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 

Friday, October 22nd, 2021

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.

Wednesday, October 13th, 2021

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, 

Friday, October 1st, 2021

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 

Thursday, August 19th, 2021

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 

Thursday, August 19th, 2021

Update on Nalcrom Supplies

The UK Mastocytosis Support Group has received the following statement from Sanofi, the licensed supplier of Nalcrom (sodium cromoglycate capsules) in the UK: “Following queries from The UK Mastocytosis Support Group regarding the situation and future availability of Nalcrom (sodium cromoglicate), Sanofi would like to clarify that the use of Nalcrom for the treatment of 

Wednesday, March 24th, 2021

Be aware of the signs and symptoms of mastocytosis

Mastocytosis may present as a skin condition – but patients with the disease are at increased risk of anaphylaxis, while its systemic form can be serious and, in some cases, fatal. Read more here.

Saturday, March 20th, 2021

Nalcrom Update as of 16 March 2021

Please find an updated stock level statement for sodium cromoglicate.