New Patient Registry for Mast Cell Disease Research

Dr. Shonna Snyder, Research Scientist with The Mast Cell Disease Society, joins Candice and Rachel to explain the new mast cell disease patient registry and why it could be a major step forward for research and care. The conversation covers what a registry is, who can join, how data privacy is protected, and how patient-reported information may help researchers uncover patterns across mast cell diseases including Mast Cell Activation Syndrome (MCAS), Hereditary Alpha Tryptasemia (HaT), and Systemic Mastocytosis. Dr. Snyder also shares her own rare disease journey and how it shapes her approach to this project.

For more information about the registry and to start your own profile visit https://tmsforacure.org/registry/

For more information about International Mastocytosis and Mast Cell Disease Awareness Day, follow along with the event at https://mastocytosis-mcas.org/about-awareness-day/

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In this episode, patient and advocate Rachell Largent-Phillips shares her journey with systemic mastocytosis, from diagnosis to advanced disease, and how advocacy has transformed her life. We explore the challenges of living with a rare disease, navigating the healthcare system, and the power of patient voices in driving change. We also get into some of the finer points of dating and intimacy while living with a complex disease. Our guests share personal stories, insights on resilience, and practical tips for managing health and fostering connection.They discuss the impact of environmental factors, medication, and emotional health on chronic conditions, offering valuable tips for those navigating similar challenges.

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https://www.instagram.com/tammie_rachell/

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In this Hero Summit mini-sode, Candice and Rachael dig into the barriers that keep people with systemic mastocytosis from confidently living with their disease — from misinformation and confusing language to complicated healthcare systems and limited physician guidance. They also explore practical solutions, including better patient education, vetted resource hubs, peer support, and technology tools that could make diagnosis and long-term care easier. The conversation highlights how patient stories and community knowledge can create real empowerment, especially for people navigating rare disease.

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