International Support and Advocacy for Mast Cell Disease Patients and Caregivers

Support for patients, caregivers, and families affected by mast cell disease, from healthcare providers, patient associations collaborating on an international level, and online forums, can offer key mechanisms through which disease management can be successfully enhanced. Mast cell diseases, including mastocytosis and mast cell activation syndrome (MCAS), are rarely diagnosed maladies involving aberrant cellular growth, activation, and/or function, resulting in heterogeneous symptomatology and presentation. Seen by many specialties, especially allergy/immunology, dermatology, hematology, and gastroenterology, many healthcare providers may not recognize these diseases, necessitating enhanced advocacy by specialists, patients, caregivers, and patient associations. Internationally, patient associations have allied with medical partners, government, and industry entities to help facilitate the patient’s journey, with the goals of diminishing time to diagnosis, improving care, decreasing stress, and enhancing patient/caregiver quality of life.