An MCAD diagnosis or investigative journey can be a lot to process. With so much literature available online, we know it can be challenging to know where to start and which sources to trust. To help support you, we have compiled a selection of resources, fact sheets and information that community members have previously found helpful.
Please be aware that this is not an exhaustive list and does not constitute a specific endorsement of these materials for any individual’s circumstances. The resources included provide broad information that may be useful, but your clinicians should always guide your individual care and decisions.
Please also be aware that language and medical guidance in the MCAD community are constantly adjusting, and particularly on matters of medication, vary from country to country.
Explore our school resources for early childhood and school-aged information.
Apps (free)
Bearable (general chronic illness)
A simple symptom and mood-tracking app designed for people with chronic health conditions, helping users record daily changes and identify patterns that may support better self-management under clinician guidance.
Care Clinic (general chronic illness)
CareClinic is a general health-tracking app that allows users to log symptoms, meals, medications and daily factors in one place, helping to identify possible patterns or triggers during clinician-guided elimination or reintroduction processes.
Mast Cell Action (UK) symptom diary (MCAD specific)
A free, printable PDF symptoms log designed to help individuals track symptom patterns, identify possible triggers and prepare clear information to share with clinicians. It includes body-system symptom checklists, trigger categories, severity rating scales and space for observations, medications and comorbidities.
Baliza Food Intolerances
Provides practical, evidence-based information about foods containing common dietary triggers such as histamine, tyramine, lactose, fructose and sorbitol. *This tool can be helpful for people who have been asked to monitor their reactivity to specific food chemicals, or for those completing a short-term elimination and reintroduction process with their clinicians to help identify food intolerance.
*Note: specialised diets are not endorsed for the management of any MCADs. This app should be used only as an adjunct to medical investigation and symptom management under your doctor’s or specialist’s guidance.
MCAD infographics, fact sheets and patient guides
TAMS patient and family brochure (2025)
This resource is designed to help patients, families and caregivers understand MCADs and prepare for discussions with their medical team. It explains what mast cells do, how MCADs are classified, common symptoms, triggers, anaphylaxis guidance and key differences between paediatric and adult presentations. It also outlines TAMS’ role in education, advocacy and community support, with information on webinars, membership and ways to stay connected.
The Mast Cell Disease Society (U.S.) print-friendly infographics
Printable infographics from The Mast Cell Disease Society (U.S.) that provide easy-to-read overviews of MCADs, covering symptoms, triggers, diagnostic information and emergency-care guidance.
I suspect I have a mast cell disease info sheet
An info sheet which provides an introductory overview for individuals who are concerned they may have an MCAD, from the International Mastocytosis and Mast Cell Diseases Awareness Day Committee, in conjunction with RARE Revolution Magazine.
‘Recognising and managing triggers info sheet
An info sheet which outlines common triggers and practical strategies to help reduce or prevent reactions, from the International Mastocytosis and Mast Cell Diseases Awareness Day Committee, in conjunction with RARE Revolution Magazine.
Emergency preparedness for mast cell diseases info sheet
An info sheet which supports emergency planning, recognition of severe reactions and preparation of essential information and medications, from the International Mastocytosis and Mast Cell Diseases Awareness Day Committee, in conjunction with RARE Revolution Magazine.
Medication safety and readiness info sheet
An info sheet providing guidance on medication considerations, safety principles and preparing for treatment changes, from the International Mastocytosis and Mast Cell Diseases Awareness Day Committee, in conjunction with RARE Revolution Magazine.
Navigating medical and dental procedures info sheet
An info sheet offering clear advice on planning for medical or dental procedures and discussing MCAD-related needs with clinicians, from the International Mastocytosis and Mast Cell Diseases Awareness Day Committee, in conjunction with RARE Revolution Magazine.
Mast cell disorders in Ehlers-Danlos Syndrome (for non-experts)
A non-expert overview explaining how mast cells function, how mast cell activation disorders may intersect with hypermobile Ehlers-Danlos syndrome and related conditions.
Indolent vs advanced systemic mastocytosis: What’s the difference? – Patient Power (HealthCentral LLC)
Outlines how indolent SM differs from advanced SM: indolent forms cause significant symptoms but usually preserve life expectancy, while advanced forms involve organ damage and require targeted treatment. Explains the use of “B” and “C” findings, the relevance of KIT mutations, delays in diagnosis, and the value of specialist care and self-advocacy.
Bone complications in systemic mastocytosis – Patient Power (HealthCentral LLC)
Summarises how excess mast cells can impair bone remodelling in SM, increasing the risk of osteopenia, osteoporosis and fractures. It highlights the need for early and regular DEXA scans, coordination between specialists and primary care, and outlines practical strategies such as safe exercise, adequate calcium and vitamin D, and appropriate use of bone-strengthening medications.
Explaining systemic mastocytosis to family and friends – Patient Power (HealthCentral LLC)
A practical guide to helping loved ones understand systemic mastocytosis, outlining what SM is, why symptoms vary widely, and why diagnosis can take many years. The resource includes insights from a clinician and a long-term ISM patient, covering common questions about symptoms, prognosis, treatment options and daily life. It also emphasises the value of specialist care, self-advocacy and connecting with SM support communities.
Visual guide to skin lesions (paediatric) – The Mast Cell Disease Society (U.S.)
A photo-based gallery showing common skin manifestations seen in mast cell diseases, including paediatric and adult presentations. This visual resource may help individuals recognise patterns consistent with cutaneous forms of mastocytosis and other MCADs, though it is not diagnostic and should be used alongside clinical evaluation.
Cutaneous lesions gallery – DermNet (NZ)
A gallery of cutaneous presentations from DermNet that may assist in recognising skin patterns sometimes reported in MCADs. This is not an exhaustive list and does not constitute medical advice.
Understanding MCAD: Free video and audio education
What are MCADs: The basics? – The Itch Podcast (Allergy & Asthma Network)
An introductory episode explaining what mast cells are, how they function, and what happens when they become dysregulated. The discussion outlines the main categories of MCADs (formerly MCDs), including mastocytosis and its subtypes, mast cell activation syndrome (MCAS), and speaks to patients with the genetic trait hereditary alpha tryptasemia (HaT). (23mins)
Do patients and providers see indolent systemic mastocytosis (ISM) the same way? – The Itch Podcast (Allergy & Asthma Network)
Summarises research showing a mismatch between how patients and clinicians rate ISM symptom severity, with fatigue, brain fog and diarrhoea often under-recognised by providers. (40mins)
GI and GU manifestations of MCAD in EDS/HSD – Dr Anne Maitland (U.S. Allergist/Immunologist)
Dr Anne Maitland outlines how MCADs can contribute to gastrointestinal and genitourinary symptoms in people with Ehlers–Danlos syndromes and hypermobility spectrum disorders. (21mins)
Living with mast cell activation syndrome – The Ehlers-Danlos Society Dr Anne Maitland (U.S. Allergist/Immunologist)
Dr Anne Maitland provides an accessible overview of living with mast cell activation syndrome (MCAS), including common symptoms, triggers, and practical approaches to daily management. The presentation also highlights how MCAS may intersect with conditions such as Ehlers–Danlos syndrome and why a multidisciplinary, symptom-focused approach can support quality of life. (36mins)
Mast cell activation disorder with Dr Anne Maitland (U.S. Allergist/Immunologist) – Immune Deficiency Foundation
Webinar on how mast cell activation can cause multi-system symptoms, how to distinguish mast cell activation syndrome from allergy and clonal mast cell disease, and why it often overlaps with primary immunodeficiency and other chronic conditions. Dr Maitland outlines current diagnostic criteria and a stepwise approach to triggers, testing and treatment. (1.5 hours)
Patient and advanced practitioner perspectives on symptom burden in indolent systemic mastocytosis (ISM) – The Itch Podcast (Allergy & Asthma Network)
A discussion of a 2025 study showing a significant gap between how people with ISM experience their symptoms and how advanced practice providers perceive them. While patients commonly report major impacts from fatigue, brain fog, and diarrhoea, clinicians often underestimate these issues, and few use formal tools such as the ISM-SAF to track symptoms. The episode highlights the need for better communication and more consistent symptom assessment. (40mins)
Mastocytosis explained: Symptoms, types and diagnosis – National Organization for Rare Disorders (NORD)
Provides an introductory overview of mastocytosis, including the abnormal accumulation and activation of mast cells, the types and key symptoms, and the general understanding of diagnosis and clinical presentation. (6mins)
A clinical yardstick for managing mast cell activation syndrome (MCAS) – The Itch Podcast (Allergy & Asthma Network)
Outlines how MCAS fits within mast cell activation disorders, the diagnostic criteria, and practical treatment approaches, while formal guidelines are still evolving. The episode also discusses common triggers, brain fog and anxiety as part of the patient experience. (38mins)
Mast cells | Normal role, allergies, anaphylaxis, MCAS & mastocytosis – ClevaLab
Outlines the role of mast cells in immunity, how they contribute to allergies and anaphylaxis, and provides an introductory overview of mast cell activation disorders, including MCAS and mastocytosis, their symptoms and general approaches to diagnosis and treatment. (10mins)
What is mast cell activation syndrome? – Dr Zachary Rubin (U.S. Pediatric allergist/clinical immunologist)
Provides a simple overview of mast cell activation syndrome (MCAS), its place within mast cell activation disorders, the three recognised diagnostic criteria, the challenges of testing and diagnosis, and how clinicians differentiate MCAS from other mast-cell–related conditions. (5mins)
Unraveling mast cell activation syndrome by American Academy of Allergy, Asthma & Immunology – Conversations from the World of Allergy Podcast
An interview with Dr Onyinye Iweala exploring how clinicians approach the diagnosis of MCAS, what clues prompt further investigation and how to understand this complex, often confusing disorder. (39mins)
9 self-care tips for systemic mastocytosis – Cleveland Clinic (U.S)
An overview of practical self-care strategies for people living with systemic mastocytosis, including stress reduction, sleep hygiene, exercise precautions, temperature and trigger management, skin care, dietary adjustments, medical alert identification and anaphylaxis preparedness. (4 mins)
Pediatric and adult mastocytosis: Clinical course and evolution of therapeutic landscape – Dr Cem Akin (USF Internal Medicine lecture, U.S.)
A detailed presentation outlining how mastocytosis presents differently in children and adults, the role of mast cells and KIT mutations, key diagnostic approaches (including cutaneous versus systemic disease and indolent versus advanced forms), and how treatment has shifted from purely symptom-based management to targeted therapies such as tyrosine kinase inhibitors. (1hrs)
KIT D816V and anaphylaxis – The Itch Podcast (Allergy & Asthma Network)
Summarises a study exploring how often the KIT D816V mutation can be detected in blood samples from adults with unexplained or severe anaphylaxis, explaining why clonal mast cell disease is often overlooked, how KIT D816V, tryptase and hereditary alpha-tryptasemia fit into assessment, and how emerging blood-based testing may help clinicians identify clonal mast cell disease earlier. (43mins)
Free course for new systemic mastocytosis patients – The Mast Cell Disease Society (U.S.)
Designed to support newly diagnosed patients and their families with clear, research-based information. Sign up to learn what systemic mastocytosis (SM) is, how it presents, and what to expect in your care. This course is intended only for individuals who are newly diagnosed with SM.
