Community

Systemic mastocytosis (SM) is a complex, rare disease and it can sometimes make you feel isolated. However, you are not alone. There are others living with SM that along with you, form an incredible mastocytosis and rare disease community.

Here are some global support groups that you can connect with:

Associação Portuguesa de Doentes com Mastocitose e Doenças Mastocitárias

The Italian Mastocytosis Association (Associazione Italiana Mostocitosis, ASIMAS)

The French Association of Patients with Mastocytosis and Mast Cell Activation Syndromes (Association française des patients atteints de mastocytoses et de syndromes d’activation mastocytaire, ASSOMAST)

The Spanish Association of Mastocytosis and Related Disease (Asociación Española de Mastocitosis y Enfermedades Relacionadas)

Mastozytose e.V. (German)

Mastozytose Selbsthilfe Netzwerk e.V. (Germany)

SELMAS mastozytose.ch (Switzerland)

The UK Mastocytosis Support Group

MASTOCYTOSIS SUPPORT ASSOCIATION ROMANIA (ASOCIATIA SUPORT MASTOCITOZA ROMANIA)

Slovenian Association of patients with Lymphome and Leukemia L&L (Slovensko združenje Bolnikov z Limfomom In Levkemijo L&L)

It is important to remember that support is available for you. Connect with other people with SM and share your SM story.

Helpful resources

Please click on any of the links below to download one of our digital resources for Systemic Mastocytosis

Challenges for People Living
with Systemic Mastocytosis (SM)

Learning About
Systemic Mastocytosis (SM)

Diagnosing Systemic
Mastocytosis (SM)

Exploring Symptoms of
Systemic Mastocytosis (SM)

Video resources

Understanding Systemic Mastocytosis:
Helping patients navigate their journey