The Mast Cell Disease Society and NORD® Launch Natural History Research Study of Mast Cell DiseasesSeptember 30, 2026 | Press ReleaseThe research study is open to participants worldwide to advance understanding and treatments for mast cell diseases. Sterling, MA, September 30, 2026 — Today, The Mast Cell Disease Society (TMS) and the National Organization for Rare Disorders (NORD) launched a study with global reach to research mast cell diseases, including all types of mastocytosis, mast cell activation syndrome (MCAS) and hereditary alpha tryptasemia (HaT). Mast cell diseases currently have no cures.The new study, the Mast Cell Diseases Patient and Provider Registry (“MCD Registry”), creates a platform for patients around the world to share information about mast cell diseases. Its purpose is to build an international resource to be used by scientists in future research. Mast cell diseases are rare disorders that occur in approximately one out of every 10,000 people. Mast cell diseases are caused by the overproduction of or an abnormal activation of mast cells, cells which normally play a critical role in immune responses. Patients with mast cell diseases experience debilitating symptoms from the release of mast cell (MC) mediators or the accumulation of abnormal MCs in body tissues leading to a variety of symptoms that oftentimes mimic other diseases and make diagnosis difficult. “Every person living with mast cell disease has a story that can help advance research and improve care for the entire community,” said Jessica Fraser, Executive Director of TMS. “Because mast cell diseases are rare, collecting high-quality, patient-reported data is essential to better understanding how the diseases progress, how they impact daily life, and where the greatest unmet needs remain. This registry creates an opportunity for patients to directly contribute to research that can inform future treatments, improve clinical care, and accelerate scientific discovery. Our long-term vision is to build a robust global resource that empowers researchers, clinicians, and the patient community to drive meaningful progress together.” “Because mast cell diseases are rare, every patient’s experience is critical to advancing research,” said Judith Emmel, TMS Board Chair. “This registry gives our community the opportunity to directly contribute data that will improve our understanding of the diseases, inform future treatments, and ultimately lead to better care for everyone affected.” To help drive awareness and participation, TMS will host a webinar on November 18, 2026, to educate patients, caregivers, and health care professionals on how to enroll in the registry, how it will benefit them, and how it will advance the field of research. TMS will also help to enroll participants during their conferences in Raleigh, NC and Phoenix, AZ and through other events throughout 2026 and 2027.“The success of the registry is dependent upon community participation. Our goal is to enroll as many patients, or their parents, caregivers, or legal guardians, as possible, so that we can impact research efforts in this debilitating disease” said Dr. Shonna Snyder, TMS’s Sr. Research Scientist. The MCD Registry is a natural history study that consists of electronic surveys to collect information about the patient experience and disease progression. Patients, or their caregivers or guardians, can enter information from anywhere in the world. The data is confidential and stored securely in the IAMRARE online portal. TMS may share the data with individuals or institutions conducting research or clinical trials, as approved by the study’s governing board that includes scientists, doctors and patient advocates. TMS is launching the study in collaboration with NORD, an independent nonprofit that built its IAMRARE® natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. TMS is a member of NORD and the two organizations work together to eliminate the challenges that rare disease patients face. “NORD’s motto is ‘Alone, we are rare. Together, we are strong.’ The launch of this new registry is a perfect embodiment of our motto and the collaboration and community engagement needed to drive forward rare disease research and outcomes for the rare community. We look forward to furthering our partnership with The Mast Cell Disease Society to best support research and innovation for mast cell diseases,” said Janine Lewis, Director of Research Operations, NORD. For more information, visit www.MCDregistry.iamrare.org. ### About The Mast Cell Disease Society The Mast Cell Disease Society (TMS) is the leading patient advocacy organization for mast cell diseases in the US. The mission of the organization is to provide multi-faceted support to patients, families and medical professionals in the mast cell disease community and to lead the advancement of knowledge and research in mast cell diseases through education, advocacy and collaboration. Learn more at www.tmsforacure.org. About National Organization for Rare Disorders, Inc. (NORD®) The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org. Media Contacts: Shonna Snyder, registry@tmsforacure.org, The Mast Cell Disease Society, Inc. NORD Marketing, media@rarediseases.org
