Mastocytosis Program

About the program

The Mastocytosis Program cares for patients with mastocytosis and mast cell activation syndromes. In addition to clinical care, it is an active site for research. Ongoing research includes basic investigations into the biology of human mast cells at the DNA, RNA, and protein level, translational research in mast cell activation disorders, and clinical trials with new therapeutic options, including monoclonal antibodies and biological agents.

Part of Allergy and Clinical Immunology

How we can help

The Mastocytosis Program provides care for adults and children with mast cell activation disorders. This includes cutaneous mastocytosis, systemic mastocytosis, mast cell activation syndromes, idiopathic anaphylaxis, and hereditary alpha tryptasemia.

The program is a multi-specialty group and includes physicians from: Allergy and Clinical Immunology, Gastroenterology, Dermatology, Neurology, Oncology/Hematology, Endocrinology, Pulmonology and Pathology. Our physicians actively collaborate with outside institutions including Boston Children’s Hospital, the National Institute of Health, the European Competence Network on Mastocytosis, and the American Initiative in Mast Cell Diseases.

What sets us apart

The Mastocytosis Program is the largest center for mast cell disease in the United States.

Our physicians are internationally recognized experts and were involved in developing diagnostic criteria for mast cell disorders.

We are able to care for complex patients through our extensive care team consisting of more than 10 physicians in eight different medical specialties.

We have developed treatment innovations such as the first ultra-rush venom desensitization protocol for patients with mastocytosis and life-threatening anaphylaxis to hymenoptera venom.

Patients seen at the Mastocytosis Program are eligible to participate in ongoing clinical and/or translational research. Our database contains over 1,500 patients, including 1,000 patients with systemic and/or cutaneous mastocytosis and 500 patients with mast cell activation syndromes. This is the largest collection of patients with mast cell activation disorders in the United States.

When MCAS evaluation is appropriate

At our practice, we evaluate patients for MCAS using established, evidence-based diagnostic criteria. MCAS is a condition defined by episodic mast cell mediator release, rather than chronic, nonspecific symptoms. We are committed to thoughtful, evidence-based care, as well as partnering with patients and referring clinicians to ensure appropriate evaluation and management. Our goal is to identify patients most likely to benefit from specialized allergy and immunology care, while avoiding unnecessary testing or misdiagnosis.

MCAS is not diagnosed based on symptoms alone. Chronic symptoms such as hypermobility or Ehlers-Danlos syndrome, fatigue, brain fog, neuropathic pain, vertigo, dysautonomia, or chronic abdominal pain — when occurring without clear episodic flares — do not meet diagnostic criteria and are unlikely to represent MCAS on their own.

We also do not evaluate for chemical sensitivities, mold toxicity, long-COVID-related concerns, or chronic multisystem illness that is not clearly linked to mast cell activation.

Evaluation for MCAS is most appropriate for patients who experience recurrent, acute episodes consistent with mast cell activation. Examples include:

• Skin: flushing, hives, angioedema, itching without a primary rash
• Gastrointestinal: acute cramping, diarrhea, nausea, or vomiting during episodes
• Cardiovascular: lightheadedness, presyncope, syncope, hypotension, or episodic tachycardia
• Respiratory: wheezing, throat tightness, episodic nasal congestion
• Systemic: anaphylaxis or near-anaphylaxis without an identifiable trigger

A key component of MCAS evaluation is evidence of mast cell mediator release, which may include:

• Elevated serum tryptase collected during an acute episode and compared with baseline
• Elevated urinary mast cell mediators collected during or shortly after symptomatic episodes
• A clear, reproducible clinical response to mast cell–directed therapy (such as H1/H2 antihistamines, leukotriene modifiers, or mast cell stabilizers)

For additional evidence-based information, we encourage patients and providers to visit The Mast Cell Disease Society, tmsforacure.org.