14/11/2025
The International Mastocytosis and Mast Cell Diseases Awareness Day Committee recently conducted an online survey with their 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 committee has shared some of the key findings and what patients reported about 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 percent remain undiagnosed, highlighting the ongoing challenges of recognition and access to care.
For those still navigating diagnosis, explore their factsheet “I suspect I have mastocytosis or a mast cell disease,” available in nine languages: https://buff.ly/atfFs1z
View the full 2-page infographic in nine languages: https://buff.ly/WLdKmMw
Graphics and materials courtesy of the International Mastocytosis and Mast Cell Diseases Awareness Day Committee.
