Learn The BasicsSystemic mastocytosis (SM) is a rare hematological disease, which is characterized by mast cells being overactive and accumulating in different parts of the body causing a range of symptoms depending on which part of the body is affected.
There is currently no cure for the SM. However, research is ongoing to develop new potential therapies.
Read on for a list of associations and organizations that provide helpful information, resources and support for people living with SM.
The Mast Cell Disease Society (TMS)
The Mast Cell Disease Society (TMS) provides support for patients, families and medical professionals and supports research into mast cell diseases.
The TMS website contains information and resources for patients and healthcare professionals about different types of mast cell diseases including SM, emergency room resources and support groups, among others.
The UK Mastocytosis Support Group
The UK Mastocytosis Support Group(UK Masto) aims to find a cure for mast cell diseases including SM and ensure people living with the disease receive early and correct diagnoses, optimal treatment and the emotional support they need.
The group supports patients to make sure they understand their disease, through advocacy and by supporting research in the field.
The UK Masto website contains information about the disease such as mast cell triggers, self care tips, ideas for fundraising and more.
The Australasian Mastocytosis Society (TAMS)
The Australasian Mastocytosis Society (TAMS) provides advocacy, education and support for people in Australasia living with or caring for someone with a mast cell disease including SM.
It is a not-for-profit organization comprised of a volunteer committee of individuals.
The TAMS website contains information about mast cell diseases, education webinars and mental health support services, among others.
Mastocytosis Society Canada
Mastocytosis Society Canada (MSC) was created to help patients, caregivers and healthcare professionals learn more about mast cell disorders such as SM and lean on each other for support.
The MSC website includes general information about mast cell disorders, their diagnosis and treatment options. It also includes resources such as webinar recordings and downloads and information about ways to get involved with the Society.
Cancer Support Community
The Cancer Support Community (CSC) works to provide support, foster compassionate communities and break down barriers to care for people affected by cancer.
The CSC website has a section dedicated to mastocytosis, which contains information about mast cells, types of mastocytosis, risk factors, signs and symptoms, diagnosis, treatment planning, treatment options, tips for coping with the disease and managing the cost of care.
National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) aims to improve the health and well-being of people living with a rare disease through advances in care, research and policy.
The NORD website includes a section dedicated to mastocytosis that contains information about the subtypes of the disease, its signs and symptoms, causes, affected populations, disorders with similar symptoms, diagnosis, standard therapies, clinical trials and resources.
