Friday, September 10th, 2021

New supply of sodium cromoglycate capsules expected soon

We understand from Sanofi that the Nalcrom branded capsules will be back in stock in November 2021. 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 

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.  

Tuesday, March 2nd, 2021

Virtual Virgin Money London Marathon 2021

The 2021 Virgin Money London Marathon is taking place on Sunday 3 October, with a record 50,000 participants running on the streets of the capital, from Blackheath to The Mall. On the same day, an additional 50,000 people will have the chance to take on the world’s greatest marathon on the course of their choice 

Sunday, December 20th, 2020

Conference and AGM 16 January, 2021

We are holding our 2020 Annual General Meeting and Conference virtually on Saturday 16th January 2021, beginning at 10 am. Our conference featured speaker will be: Dr Qasim Aziz, a gastroenterologist who will be speaker about GI symptoms in all forms of mast cell disease (Mastocytosis, MCAS and HaTS).  Our survey this summer identified GI 

Monday, July 20th, 2020

COVID-19 Supermarket Letter

We know how difficult it has been for many of you to access safe foods throughout this period. We would like to invite you to join us, along with the Mast Cell Action, in contacting your local supermarket and ask for them to consider your needs during these difficult times. Please find below a downloadable 

Monday, July 20th, 2020

Shielding and Exit plan

We are pleased to be able to share this document which has been created in collaboration with Mast Cell Action (https://www.mastcellaction.org) to help share what we currently know about government guidance on shielding vulnerable patients during the Covid-19 pandemic and to share suggestions and experiences to try to help make things easier during this difficult 

Sunday, March 29th, 2020

The COVID-19 Outbreak Advice for UK patients with Mast Cell Diseases from UK Mast Cell Disease Doctors March 27, 2020

There is much we don’t know about how COVID-19 might affect mast cell disease patients. We have heard now from a small number of people with a mast cell disease who also believe they have had COVID-19 (though no confirmed cases because testing is now only being done in hospital and none has required hospitalisation)