31/07/2026
VERY IMPORTANT!
🔬 MCAS Advocacy & Evidence Gathering – Update & Call for Support
Hi everyone, We wanted to share a quick update on some of the work currently underway and also invite anyone who hasn’t yet taken part to consider sharing their experience.
We are now actively gathering structured patient data to help build a clearer picture of how Mast Cell Activation Syndrome (MCAS) is affecting people across the UK.
đź“Š So far, we are beginning to see:
Engagement from MPs, with some already responding and showing interest.
A response from NICE confirming there is currently no formal guidance for MCAS, but that this does not mean the condition should not be recognised.
Early signs that both patient data and lived experience will play an important role in shaping future progress.
This is important, because without clear guidance, many people are experiencing delays, dismissal, and inconsistent care — and this is something we are working to evidence properly.
🧠Why this matters:
The more consistent and structured data we can gather, the stronger the case becomes for:
Better recognition within the NHS.
Clearer clinical pathways.
Future consideration for NICE guidance.
📣 What’s next:
Over time, the aim is to bring this work together into something meaningful — including a potential parliamentary drop-in event where:
Key findings and data are presented.
A small number of patient stories are shared.
MPs, healthcare professionals, and other stakeholders can engage directly with the reality of MCAS.
đź’¬ How you can help:
If you haven’t already, you can contribute by completing the short form below. You can remain anonymous if you prefer.
👉 https://form.jotform.com/260892116925361
Every response adds weight. Every story helps build the bigger picture.
Thank you to everyone who has already taken part — this is already starting to make a difference. ❤️
