Understanding life with mast cell diseases: Insights from our global community
The International Mastocytosis and Mast Cell Diseases Awareness Day Committee recently conducted an online global survey with our 2025 Awareness Day content partner, RARE Revolution Magazine, available in six languages, to gain a deeper understanding of the unmet needs of people living with mast cell disorders such as mastocytosis, mast cell activation syndrome (MCAS) and hereditary alpha tryptasemia (HaT).
Our incredible community rose to the challenge – more than 1,000 people shared their experiences! The results provide valuable insight into the daily realities of living with these rare and often rarely diagnosed conditions.
Of the 1,040 participants, the majority reported a diagnosis of mastocytosis or MCAS, while around 5% remain undiagnosed, highlighting the ongoing challenges of recognition and access to care.
Download the two-page infographic to explore the key survey findings, including:
- Common triggers and emergency preparedness
- The impact on daily life, work and relationships
- Financial pressures faced by those living with mast cell diseases
- Community perspectives on understanding and support
Download the patient insights infographic by language:
English | Dutch | French | German | Italian | Polish | Portuguese | Romanian | Spanish
Thank you
We hope these insights help raise awareness and encourage greater understanding of the challenges faced by those living with mast cell diseases around the world.
We would like to extend our thanks to our Platinum Sponsor, Blueprint Medicines, and Gold Sponsor, Cogent Biosciences, for sponsoring this global health initiative to help inform and connect the mast cell diseases community.
We also thank our content partner, RARE Revolution Magazine, for their support and creativity in amplifying awareness through informative content and patient perspectives.