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:
Mastocytosis Austria (Mastozytose Österreich)
Independent Austrian patient organisation providing information and support
Independent Austrian patient organisation providing information and support
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
Video resources
Understanding Systemic Mastocytosis:
Helping patients navigate their journey
Interview with Jess Hobart - Chair of the UK Mastocytosis Support Group
Interview with Eugenia Ribada – Secretary of the Spanish Association of Mastocytosis and Related Diseases
Interview with Gabriela Coletti – Co-President of SELMAS mastocytosis.ch
Interview with Filomena Pereira - President of the Portuguese Association of Patients with Mastocytosis and Mast Cell Disorders, APORMAST
Interview with Nicole Hegmann - Mastocytosis Self-Help Network Reg. Assoc.
Interview with Antje Händel – Second Chairwoman of Mastocytosis Reg. Assoc.
Interview with Patrizia Marcis - ASIMAS, Italian Mastocytosis Association
Webinars
(Sponsored Webinar)
Systemic Mastocytosis: “Are we speaking the same language?”
Blueprint Medicines, a Sanofi company, had no control over the choice of speakers, curation of the webinar or it's communication materials.
(Sponsored Webinar)
Understanding anaphylaxis in the context of mastocytosis
Blueprint Medicines, a Sanofi company, had no control over the choice of speakers, curation of the webinar or it's communication materials.
