Finding Support

Finding reliable information and connecting with others who understand your experience can help you in your systemic mastocytosis journey.

Patient Organizations

Several established organizations provide education, advocacy, and community for people with mast cell disorders:

The Mastocytosis Society, Inc. (TMS) offers trusted resources, community, and research to help individuals understand, manage, and live fully with mast cell diseases. They also fund research and advocate for the mast cell disease community.
Visit tmsforacure.org

The American Initiative in Mast Cell Diseases (AIM) is dedicated to advancing the research, education, and treatment of mastocytosis and related mast cell diseases. They aim to establish a network of experts and collaborate with other organizations to improve care.
Visit aimcd.net

EveryLife Foundation for Rare Diseases empowers the rare disease community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.
Visit everylifefoundation.org

National Organization for Rare Disorders (NORD) is a patient advocacy organization that provides support for individuals with rare diseases and the organizations that serve them, including resources, support, and advocacy efforts.
Visit rarediseases.org

Community Connections

Many people with systemic mastocytosis find tremendous value in connecting with others who understand their experiences:

Online Communities include Facebook groups dedicated to mastocytosis and mast cell disorders, online forums, and virtual support groups organized through patient organizations.

In-Person Opportunities such as patient conferences and local rare disease support groups allow for face-to-face connections and learning opportunities.

• View the SM events calendar at TMSforaCure.org/events

Expanded Access Programs

Sometimes called “compassionate use”, expanded access is a potential pathway for a patient with a serious or immediately life-threatening disease or condition to gain access to an investigational medical product (drug, biologic, or medical device) for treatment outside of clinical trials when no comparable or satisfactory alternative therapy options are available.

To learn more about Cogent Biosciences’ expanded access policy, visit Cogent’s Expanded Access Program.