We're really pleased to be able to publish our latest resource - a guide to planning for Anaesthesia and Surgery for those living with MCAS. We understand that planning for surgery or any procedure requiring anaesthesia can feel daunting when you have MCAS. These situations can bring uncertainty - but with the right preparation and support, they can be managed safely. This guide, developed by members of our Medical Advisory Board, aims to help you feel more confident and informed about what to expect. We are particularly grateful to Dr Anton Krige for his help in writing this resource. Dr Krige has been a Consultant in Intensive Care & Anaesthesia for over 20 years, and his invaluable expertise mean that this guide will be reassuring for our community members that surgery and anaesthesia can be performed safely and successfully for those with MCAS. Look out for our podcast episode with Dr Krige next month, where we will explore this topic in more detail!
We’re delighted to share the Mast Cell Action podcast, Let’s Talk MCAS with you! Our first episode where our host Deborah Bircham chats with Joy Mason, Mast Cell Action’s CEO, is now live.
Find out about Joy’s own personal journey with MCAS, what keeps her going through the tough times, and also get some behind the scenes info about what’s going on at Mast Cell Action. Joy updates us on her journey from volunteer to CEO, and shares what the charity is working on to improve the lives of people living with MCAS.
Listen on Spotify, Amazon or wherever you get your podcasts. We’re not quite launched on Apple yet but we hope to be soon. Please subscribe or follow the podcast for more great conversations, and why not share with someone else who might find it helpful.
We’re pleased to share a new partnership that may help make accessing medication a little easier for those who are in a position to purchase privately. Courier Pharmacy is now offering the Mast Cell Action community 10% off purchases. They will also make a small donation to Mast Cell Action when you use our link. Use this coupon code: mastcell
We know that pharmacy access, affordability and delivery can be challenging for people living with MCAS. If Courier Pharmacy feels right for you, this partnership offers a way to save on your order while also supporting our charity’s work. As always, Mast Cell Action does not promote one pharmacy over another. We encourage you to explore your options and choose what best meets your needs.
Partners across the Overlapping Illness Alliance (OIA) met on 10 February to reflect on our shared priorities, review recent advocacy activity, and agree next steps for our collaborative work. This includes progressing joint commitments, strengthening how we work together, and planning ahead for the year to come.
As always, this work is rooted in listening to the lived experience of people with overlapping and under-recognised conditions, and pushing collectively for meaningful, lasting change. We’ll share more as the work develops!
We want to thank you all for your calls for the guidelines in our recent community survey. Your feedback is vital to keep us focused on your needs.
In discussions to progress the MCAS guidelines, our next steps have become clear. We need more UK-specific evidence to meet the threshold required for guideline development and endorsement from other UK professional medical societies. This groundwork is fundamental to achieving guidelines that are robust and evidence-based.
We are working in partnership with clinicians to help us achieve both of these requirements. We will continue to keep up momentum on this work until the guidelines are published and widely supported across the UK healthcare system.
In January, Mast Cell Action wrote to the Department for Education to support Amendment 502YG (Benedict’s Law), part of the Children’s Wellbeing and Schools Bill.
We highlighted the risks children with Mast Cell Activation Syndrome (MCAS) and other allergies face in schools, including inconsistent policies, limited staff training, and unclear responsibilities. The amendment strengthens school accountability, improves preparedness, and supports access to emergency medication—helping children attend school safely and with confidence. We remain committed to advocating for stronger protections and greater awareness to keep children with complex allergies safe.
We’re so thrilled that we achieved our target for match funding with the Big Give Christmas Challenge! We raised an astonishing, £16,030! Thank you to every donor, matched funder, and advance pledger who supported us during this year’s Big Give campaign.
Because of you, we can now move forward with confidence, delivering the essential support, resources, and advocacy that people living with MCAS urgently need.
Thank you for standing with our community and for creating meaningful and lasting change.
Over 50 MPs, Peers, and their colleagues attended the Overlapping Illness Alliance's drop-in event in Parliament last week.
The event raised much needed awareness and understanding of the impact of the illnesses represented by the Alliance's founding members. It provided an opportunity to engage with parliamentarians, highlighting the many overlaps that exist, including the effects of the lack of complimentary health and social care available for people with one or more of the illnesses, alongside the education and economic impact, and stigma, that so many still experience.
Thank you so much to everyone who took the time and energy to contact their MP to invite them to the event. Thanks to you, almost 80% of all MPs received requests to attend the drop-in, directly from their constituents. One MP told us it was the most letters they had received about a single event, so your support really did make a difference!
All those attending identified that this joined up, collaborative approach across illness areas is much needed and will have greater impact, including in engaging parliamentarians and creating a powerful, united voice.
The event also saw the launch of the Alliance's first resource - a brief guide for parliamentarians, which can be found on the Alliance's website, alongside a list of attendees from yesterday's drop-in . You can access the resource here.
We will build on this event with follow up with all attendees and by working collaboratively to identify tangible actions that can be taken to sustain this momentum and awareness in Parliament, further demonstrate the significant impact of these illnesses, and what must be done to improve the lives of those affected by them.
Discussions are also underway regarding taking on new member organisations and an update on this will be shared, early next year. We very much look forward to growing the Alliance and together, building a fairer future where overlapping illnesses are recognised, respected, and properly treated.
Did you know you can support Mast Cell Action every time you shop online—at no extra cost to you? By joining Easy Fundraising, many retailers will donate a percentage of your spend directly to us.
It’s a simple way to make a big difference, turning your shopping into support for the MCAS community. It only takes a minute to sign up, and won’t cost you a penny. Scan the QR code on the left, or click the button below and type in Mast Cell Action get started.
We're delighted to share with you a handy two page brief guide to MCAS. It's an easy to read overview of mast cells, MCAS symptoms, triggers, management, treatment and the histamine bucket theory. It's helpful for anyone new to MCAS or ideal for sharing with your friends, loved ones, family or colleagues.
In 2025 Joy and Charise attended the RCGP conference in Newport. It was an absolute success, with over 200 information packs given out to GP’s and 58 joining our HCP network.
They engaged with hundreds of doctors, shared stories and research and made some great connections which we hope will support our work moving forward.
We have been invited to speak to multiple GP surgeries and networks of GP’s to deliver training on MCAS and know we will be very busy in the coming months preparing for this vital work.
We're excited to announce the launch of our new resource, Nourishing Health and Happiness with MCAS! We have worked with dietitian, Chloe Hall, to explore some of the most common diets followed by people with MCAS, and the key nutritional concerns that often arise. This resource is a comprehensive look at all things diet and MCAS, and how we can support ourselves to eat well when living with MCAS. This resource was funded by the Postcode Places Trust, a grant-giving charity funded by players of People’s Postcode Lottery.
We have now moved to a brand-new, bespoke events platform!
This upgrade will make it easier than ever to register for events, access important info, and stay connected with Mast Cell Action. Please note that all existing links to register for events will no longer work. If you have already registered to attend an event, you do not need to register again. You can access all Mast Cell Action events here.
Our trustees recently came together to map out our plans for the next financial year. Their dedication and insight help shape the future of Mast Cell Action, ensuring we continue to support, advocate, and drive change for the MCAS community.
A huge thank you to our trustees for their time, expertise, and commitment! We look forward to sharing more information about upcoming plans as they are finalised.
We’re proud to announce that Mast Cell Action has been awarded the PIF TICK, the UK’s only quality mark for trusted health information. This means that our resources meet the highest standards of accuracy, clarity, and reliability, giving you confidence in the information we provide.
The PIF TICK is awarded by the Patient Information Forum (PIF) to organisations that follow a rigorous, accredited process to produce high-quality health information.
At Mast Cell Action, we know how important it is to have reliable, up-to-date information about Mast Cell Activation Syndrome (MCAS). This accreditation reinforces our commitment to supporting our community with trustworthy resources.
Mast Cell Action are delighted to have partnered with CamRARE to create a Rare Disease Passport for those living with MCAS!
CamRARE have collaborated with families and clinicians to create a fillable, personalised health & care passport to help you communicate your key medical and care information in an emergency, away from home, or when meeting new people.
If you wish to create your own passport, you can navigate to the CamRare form here and you can now choose from the drop-down menu to have a Mast Cell Action passport. Your Mast Cell Action branded passport will then be sent to you to fill in with all the key information that people need to know about you and your condition.
Thank You for Your Feedback!
Our medical engagement team have been working hard on a new poster, created using the valuable feedback from our experiences questionnaire earlier this year. This poster highlights key insights and experiences from our community, shedding light on the challenges and needs within the MCAS community. We presented this poster at the recent BSACI conference and it served as a powerful visual to the healthcare professionals there.
A huge thank you to everyone who participated in the questionnaire—your input has been instrumental in shaping our work and helping us represent your voices. We would also like to extend our gratitude to our dedicated medical engagement team for transforming your feedback into an impactful presentation.
Exciting News: Grant Award for Wellbeing Support!
We are thrilled to announce that we have been awarded a grant from Sport England and the National Lottery! This funding will allow us to provide wellbeing support to our community over the next six months.
Through this project, we will offer weekly Pilates sessions and "Move to Music" classes, providing gentle, enjoyable ways to stay active and engaged.
In addition to live classes, we’ll also be creating a library of YouTube content so that you can join in at your own convenience, allowing you to manage your energy levels and symptoms while participating in a way that works best for you.
You can read more and book onto the new classes here.
Our New Trustee: Claire Bounds
We are delighted to welcome Claire Bounds, (BA Psychology, PgDip HR, MSc HR, Assoc CIPD) as a Trustee at Mast Cell Action.
Claire has volunteered with us for many years, overseeing recruitment, policies and procedures, and exit procedures.
Among other tasks, Claire also supports with health and safety, and is our safeguarding lead.
We are thrilled that Claire is the newest addition to our Trustee board, please join us in giving her a warm welcome. You can read more about Claire here.
Unity Lottery
Together we can make amazing things happen! Mast Cell Action has signed up to the unity lottery! Unity is the nation's fundraising lottery platform. It's designed to give good causes the chance to raise money through a weekly lottery. When you join a lottery using the Unity platform, at least 50p of every £1 you play goes to your chosen cause. The remaining 50p is used by the platform to provide prizes and cover administration.
How to play
- Choose Mast Cell Action as your chosen cause and pick how many £1 entries you’d like to play each week
- Click to join online by Direct Debit or Debit Card, or alternatively download the postal form
- Fill out your details and click submit, or post your form to the Freepost address
National Lottery Awards for All
We are delighted to share that we have been awarded a National Lottery Awards for All grant to create a self-management resource for people living with MCAS.
The pack will include symptom logs and guidance sheets to help individuals to manage the complex triggers often associated with MCAS and will be available to download for free from our website.
We can’t wait to be able to share this with you!
Thank you to the players of The National Lottery!
If you have any thoughts or suggestions about other activities or projects that we could be doing to support the MCAS community, or if you feel you have something to offer that can contribute towards making a better life for MCAS patients, we would like to hear from you.
Please contact us to share these ideas.
"Thank you so much for the amazing work you are doing to support those with mast cell disorders, and in raising awareness of these conditions. You are wonderful!"
Become a friend
Sign up to become a Friend of Mast Cell Action so we can keep you up to date on our progress and on how to get involved in our latest campaigns and initiatives.
Donate
Mast Cell Action relies entirely on the generosity of people like you. Please make a donation now and together we can make a difference to those affected by MCAS.
