Penn Comprehensive Adult Thalassemia Program
The Penn Comprehensive Adult Thalassemia Program provides comprehensive medical care to people with:
- Beta thalassemia
- Alpha thalassemia
- Hemoglobin E disease
- Related disorders of hemoglobin production or function
- Transfusional iron overload
The program is led by physician-hematologists who specialize in thalassemia, and is supported by a dedicated nurse coordinator, hematology nurses and social workers.
Program physicians, nurses, and staff recognize the unique challenges that face patients with thalassemia, and work closely with Penn specialists from a variety of disciplines – including transfusion medicine – to ensure patients receive the expert care and attention they require to lead healthy and productive lives.
The Penn Comprehensive Adult Thalassemia Program also works closely with the Thalassemia Center at The Children's Hospital of Philadelphia to ensure seamless transition of care for young adults with thalassemia and related disorders as they enter adulthood.
Other features of the thalassemia program include:
- Coordinated care with adult physician-specialists in cardiology, endocrinology, gastroenterology, pain, ophthalmology, and other areas of importance to patients with thalassemia.
- Expertise in transfusional iron-overload diagnosis and management.
- Collaboration with radiologists to provide necessary liver and cardiac iron monitoring by MRI, DEXA scan, and other necessary investigations.
- A state-of-the art infusion suite that is adjacent to the thalassemia program clinic.
- Dedicated phlebotomy services.
- In-clinic education to help patients and their families understand thalassemia and how to manage it.
- A close partnership with Penn Ob/Gyn to provide obstetric care and genetic counseling for women who are pregnant or who are thinking about starting a family.
- Expertise in related conditions including:
- Hemoglobin E/beta-thalassemia
- Hemoglobin H/alpha thalassemia
- Hemoglobin Lepore
- High- and low-oxygen affinity variant hemoglobins
- Hereditary persistence of fetal hemoglobin (HPFH)
- Hemoglobin S/beta-thalassemia
- Sickle cell trait and disease
- Hemoglobin SC disease
- All other disorders of hemoglobin production and function
- Second opinions and consultations for patients with thalassemia who are managed by physicians outside of the Penn system.
- An active patient and family advisory council that collaborates to optimize thalassemia care and to improve its efficient delivery.
- Active clinical and basic science research programs funded by foundation and federal (NIH) grant awards.
In This Section
View a list of recommended thalassemia resources.