Section of Benign Hematology

Rare Hematological Disease Program

The Rare Hematological Disease Program is a service provided in conjunction with The Center for Benign Hematology. It takes advantage of the expertise offered by faculty members within the Section of Hematology and in collaboration with other medical and surgical specialists available within the University of Pittsburgh Medical Center.

The mission of the Rare Hematological Disease Program is provide rapid and convenient diagnostic and therapy related advice to referring physicians and patients when a rare hematological disorder is encountered or suspected.

A referral to the Rare Hematological Disease Program will be followed by a brief telephone discussion with the referring physician and patient. Available medical records will be obtained for review. The patient will then be assessed by a Master Clinician and necessary other consultations initiated. To take advantage of the many years of experience with our Program, a Rare Hematological case will be discussed by a panel appropriate experts and specific recommendations offered. Once assessed, and if appropriate, the patient will be seen by a faculty member with specific interest and expertise.

It is our goal that, whenever possible, patients referred to our Program be returned to their community for continued care. Once assessed by the Rare Hematological Disease Program, both the patient and referring physician can be assured that we will continue to available for advice and support through the course of the disease

Typical rare disorders seen in the Rare Hematological Disease Program include:

• Porphyria
• Hereditary Hemorrhagic Teiangiectasia (in conjunction with the UPMC HHT Center)
• Coagulopathies
• Cold Reactive Hemolytic process such as Cold Agglutinin Disease
• Adult Gaucher’s Disease and other lipid storage disorders
• Unusual Hemoglobinopathies
• Langerhans, Rosai Dorfman, Erdheim Chester Disease
• Paroxysmal Nocturnal Hemoglobinuria
• Refractory thrombotic disorders and TMA
• Hemophagocytic Lymphohistocytosis
• Mast Cell Disorders (Systemic Mastocytosis, Mast Cell Activation Syndrome (in conjunction with the Division of Pulmonary and Allergy Medicine)
• Iron Overload Syndromes