Trustee Meeting
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.
New Events Platform
Exciting News!
We will soon be moving 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.
A huge thank you to our amazing volunteer, James, for his hard work in making this happen!
Please note that, when the new system goes live, all existing links to register for events will no longer work.
Further details to follow
New Resource: A Primary Care Guide
We’re excited to introduce our latest resource—a Primary Care Guide to Mast Cell Activation Syndrome.
This comprehensive guide brings together key information on common triggers, diagnostic criteria, and symptom patterns across different body systems, all in one accessible document.
Our goal is to support clinicians in identifying and distinguishing Mast Cell Activation Syndrome from other conditions, improving understanding and treatment.
We encourage you to share this resource with your healthcare professionals.
You can access the guide here.
We’re Now PIF TICK Accredited!
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. To achieve this, we demonstrated that:
✔ Our information is evidence-based and regularly reviewed
✔ We consult experts and people with lived experience
✔ We are transparent about our sources
✔ Our content is clear, accessible, and easy to understand
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.
CamRARE Rare Disease Passport
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.
There is space on the passport for you to fill in your medical specialists, key diagnoses, symptoms, allergies, medications, care needs, and emergency contacts. You can personalise it in the ‘Additional Information’ section, plus add ‘Top 3 Things to Know’ about you.
It is possible to fold your passport to fit into a wearable lanyard, or file it and store it somewhere safe.
Medical professionals will have all the information they need to care for you in an emergency together in one place.
Why not request your passport today? Click here for the form.
Introducing Nishti Udeh
We are delighted to welcome Nishti Udeh to our dietetic advisory board. Nishti is a highly experienced children’s dietitian with over 12 years of expertise in supporting families through the challenges of food allergies, feeding difficulties, and eating disorders.
Nishti’s extensive experience spans both the NHS and private sectors, where she has provided invaluable support to children with complex needs. Her specialties include managing conditions such as cow’s milk protein allergy (CMPA), mast cell activation syndrome (MCAS), histamine intolerance, gut health challenges, autoimmune neuropsychiatric disorders, and Avoidant/Restrictive Food Intake Disorder (ARFID).
Collaborating closely with leading experts like Dr. Costa, a renowned MCAS specialist, Nishti ensures her approach is both comprehensive and tailored to each child’s unique requirements.
You read more about Nishti and the other members of our dietetic advisory board here.
Welcome to the team, Deborah!
We are delighted to welcome the newest member of our team.
Deborah has just joined the Mast Cell Action team our new Community Support Coordinator.
She lives with chronic pain, MCAS, Dysautonomia and Lyme Disease, and she is really excited to join the Mast Cell Action team so she can use her own lived experience of long-term illness to help others.
Read more here.
Mastocytosis and Mast Cell Disease Awareness Day
Join us on October 20th as we recognise Mastocytosis and Mast Cell Disease Awareness Day.
This year, we're launching a social media campaign, and getting involved has never been easier.
Like, comment, and share our posts on social media to help spread the word as far and wide as possible. Each interaction makes a difference in raising awareness and supporting our community.
Together, we can shine a light on Mast Cell Activation Syndrome and other mast cell diseases.
Let's make a difference, one post at a time!
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.
We have launched our Peer Support Service
We’re thrilled to announce the launch of our brand-new Peer Support Service designed to provide emotional support, guidance, and a sense of community to those living with Mast Cell Activation Syndrome.
Whether you’re navigating a new diagnosis, feeling overwhelmed by symptoms, or looking for someone who truly understands what it’s like, we’re here for you!
Our peer support service connect you with others who’ve been through it, offering insight, compassion, and understanding.
Find out more and sign up here.
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.
Hopeful Progress at annual BSACI Conference
We are thrilled to share the wonderful outcomes from our recent attendance at the BSACI (British Society for Allergy & Clinical Immunology) conference, where we had a remarkable opportunity to connect with healthcare professionals and promote awareness of MCAS.
Over 100 leaflets on MCAS testing were distributed, highlighting the need for more education about lesser-known diagnostics, such as the prostaglandin/urine test, which many allergists were unaware of. We shared powerful resources, community stories, symptoms graphics, our bibliography of papers, and our service leaflets.
One of the most promising aspects of the conference was hearing from many allergists who recognised MCAS symptoms in those in their clinics after reviewing our leaflets.
It was clear that awareness is growing, but many clinicians still need support and confidence in treating patients. By fostering connections, we can help bridge this gap.
Encouragingly, 37 new Health Professionals joined our database, showing real potential for collaboration and learning.
We’ve also been invited to speak about MCAS at The South Thames Allergy Summit next September, another incredible opportunity to share our message with more medical professionals.
The conference left us feeling inspired and hopeful. It reinforced the importance of showing up, engaging, and connecting with healthcare professionals.
We are proud to be a Living Wage Employer!
We are delighted to announce that Mast Cell Action is now officially a Living Wage Employer!
This commitment means that every member of our team, whether permanent or contract, receives at least the Living Wage – an hourly rate that reflects the real cost of living and is independently calculated to meet basic needs.
At Mast Call Action, we believe in valuing and investing in our people. Paying a fair wage not only helps our employees and their families thrive but also strengthens our community and supports a healthier, more resilient economy. We’re proud to join thousands of other employers who are leading the way in providing fair compensation, respect, and support to their teams.
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.
Post Places Trust Award
We are delighted to have received an award from Postcode Places Trust, a grant-giving charity funded entirely by players of People’s Postcode Lottery.
Our Dietetic Resources Project aims to empower those managing MCAS by providing comprehensive, evidence-based dietary resources and well-being support.
A big thank you to The Players of The Postcode Lottery for their generous support, making this vital work possible.
Stay tuned for more updates coming soon.
International Mast Cell Awareness Month - Update
We are thrilled to share the incredible success of our first ever International Mast Cell Disease Awareness Month this past June.
With 274 event attendances and 505 tickets issued, the response was overwhelmingly positive.
Our social media outreach made a significant impact, generating nearly 150,000 impressions and attracting 740 new followers across all platforms.
Thank you to everyone who participated and helped raise awareness about Mast Cell Activation Syndrome!
NEW: Wellbeing Advisory Board
We are delighted to announce the formation of our new Wellbeing Advisory Board.
The Wellbeing Advisory Board is a dedicated team of experts and advocates passionate about enhancing the quality of life for people living with MCAS.
Our board will guide us in developing resources and services that address the physical, emotional, and social challenges faced by our community.
You can read more here.
Funding for new study
We are delighted to be co-funding a study which will be assessing MCAS, HAT and mastocytosis patients for proteomics, biomarker testing and microbiome tests.
The project is called: ' Discovering new clinical biomarkers linking MCAS, mastocytosis and HAT'. There may also be an opportunity to assess linkage of MCAS to hEDS and PoTS.
Dr Bethan Myers from Leicester Royal Infirmary will be leading the study which we expect to commence later this year. Dr Myers is primarily a Consultant in Haemostasis, Thrombosis and Obstetric Haematology and runs a monthly MCAS clinic.
Watch this space for further updates.
International Mast Cell Disease Awareness Month
Join us in marking a historic milestone - the inaugural International Mast Cell Disease Awareness Month!
Throughout this dedicated month, we're shining a spotlight on mast cell diseases, fostering understanding, and igniting conversations worldwide.
From rare conditions like mastocytosis to the increasingly more common MCAS, these diseases affect many people globally.
Through education, advocacy, and support, together, we can make a difference. Let's raise awareness, inspire hope, and empower those impacted by mast cell diseases. Find out more about Awareness Month 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 Reaching Communities grant
We are thrilled to announce that Mast Cell Action has been awarded a generous £174k multi-year grant to support our community engagement work!
This incredible funding will enable us to expand our efforts in raising awareness and providing support for those affected by mast cell disorders.
None of this would be possible without the support of our amazing community and the dedication of our team. Thank you all for being a part of this journey!
Stay tuned for exciting updates as we embark on this new chapter. Together, we can make a real difference in the lives of those affected by mast cell disorders.
Medical Engagement Team
Our brand new Medical Engagement Team were recruited in July and came together for the first time in September to begin their planning for our medical engagement work.
This is the beginning of our new team, and we are already focussed on the additional members of the team that we need to recruit to strengthen the team even further.
Lauren, Ade and Sherrin began the planning for our work in this area and presented their plans to our Trustee board.
Read more about them here.
We are delighted to have them all onboard and can't wait to share their work with you once they are fully settled in!
2023 CIM Global Marketing Excellence Awards
Our MCAS Moments campaign, created by Mast Cell Action volunteer - Jillian Shields with artwork by Mast Cell Action volunteer Katrin, is a finalist at the 2023 CIM Global Marketing Excellence Awards!
Shared across our Instagram, Twitter and Facebook platforms, our MCAS Moments campaign shares a series of moments in life with MCAS, to help us to connect with others experiencing similar moments and to raise awareness among the wider population of what these moments can be like for people living with MCAS.
We hope this helps us to get the message out about MCAS and raise awareness even further.
Thank you Jillian and Katrin for bringing such an important campaign to life.
MCAS webinar for Healthcare providers
In June, we were delighted to hold our first MCAS webinar with Dr Bethan Myers MCAS Specialist Dietitian, Chloe Hall.
Many Healthcare providers came along for an introduction to MCAS and expert guidance from our guest speakers.
Thank you to Dr Myers and Chloe for giving up their time to support the session and help us to share knowledge with others.
There were lots of questions at the end of the session which we will be developing into a Q&A for our website. Watch this space for further details!
If you missed this session, don't worry - you can still view it on our YouTube channel here.
MCAS presentations
We are delighted to have been asked to present to multiple groups recently including Norfolk and Dorset Long Covid Multi-disciplinary teams, a group of dietitians interested in MCAS, and the Stockport ME support group.
With nearly 200 people attending these presentations, we are delighted to have had the opportunity to raise awareness and share knowledge about MCAS and hope to be able to continue to expand on this work in coming months.
If you are part of a team who would benefit from a presentation about MCAS, please do get in touch so that we can create something for you.
Advocacy groups
We are regularly contacted by people looking for support with advocacy.
In order to maximise the support we can offer in this area, we recently presented to Advocacy Focus, a charity that provides high-quality advocacy services across the North-West of England. This session was designed to share information about MCAS and help attendees to understand the difficulties often faced by those living with MCAS.
This presentation was recorded and we intend to work with other advocacy charities to raise awareness across the UK. If you are an advocacy group interested in learning more about MCAS, please get in touch for further information.
Mast Cell Action Trustee, Gawain with Dr Myers and Morwenna Opie Moran one of the PoTS UK Trustees - July 2022
Dr Bethan Myers recently presented at the PoTS Masterclass Conference on behalf of Mast Cell Action sharing that; based on a small sample of survey respondents, MCAS appears to be a condition that overlaps with a diagnosis of Long Covid (and PoTS). We hope that we will learn more about this link with time and research.
Trustee, Gawain spoke with doctors at the BSACI - May 2022
This year's annual immunology conference (The BSACI) coincided with the world allergy conference… so it was a great opportunity for the charity to not only meet UK based medical professionals but also engage with doctors and researchers from around the world.
Gawain and Isaac, a junior doctor doing an internship with the charity, manned the stand and spoke to many different specialists, distributing our literature on MCAS and sharing patient stories. We told people about Mast Cell Actions activities and recruited more supportive doctors!
Ruth, Soumya and Isaac at the BSACI - October 2021
We attended the BSACI annual congress in Harrogate to raise awareness. We spoke to doctors, nurses, dieticians, and other healthcare professionals about MCAS, and shared educational materials and wellbeing resources to help support people affected by MCAS.
This was a great opportunity to give out literature and engage with healthcare professionals.
In 2020 we created a film about MCAS to share at the BSACI. You can view it here.
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!"
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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.
