Tuesday, January 4th, 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
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 (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
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
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
Friday, September 10th, 2021
We recommend you ask your pharmacy to look for both the branded Nalcrom product and the generic capsules if you are looking to fill a prescription, given that supply levels are unclear. You may also consider requesting the liquid product (as described below). Sanofi’s Nalcrom branded product was restocked in December, with all stock
Thursday, August 19th, 2021
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
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
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
Please find an updated stock level statement for sodium cromoglicate.
Address registered with the Charity Commission:
86-90 Paul Street
London
EC2A 4NE
Registered name:
The UK Mastocytosis Support Group
Charity number is:
1154007