St. Jude Pediatric and Adolescent Histiocytosis Consult Clinic

 

Providing expertise, education and support for children with Langerhans cell histiocytosis and other histiocytic disorders, and their families.

 
 

St. Jude Children’s Research Hospital has been treating children with histiocytosis for nearly 50 years. Our physicians are experts in research and treatment for these rare disorders, including Langerhans cell histiocytosis (LCH), juvenile xanthogranuloma (JXG) and other histiocytic disorders. As the coordinating center for the North American Consortium for Histiocytosis (NACHO), we also work with other network hospitals to provide support for histiocytosis clinical trials.

The St. Jude Pediatric and Adolescent Histiocytosis Consult Clinic is a two-day clinic that brings patients and families to St. Jude for an expert consultation, as well as medical examinations by leading specialists, educational seminars and an introduction to histiocytosis-related resources. While hemophagocytic lymphohistiocytosis (HLH) is a histiocytic disorder, HLH will not be the focus of this particular consult clinic.

Patient families who attend the histiocytosis clinic are provided travel, housing and meals during the on-site consultation. Following the clinical evaluation, St. Jude will provide a written report, with treatment recommendations, to the family and referring physician. 

Please sign up for our email updates to be notified of the next consult clinic date.

Refer a Patient

To be eligible, patients must be:

  • Age 21 years or younger
  • Referred by a physician
  • Currently being treated or followed by a physician who requests or supports a consult to optimize the clinical management of the patient
  • Diagnosed with one of the following histiocytic disorders:
    • Langerhans cell histiocytosis
    • Juvenile xanthogranuloma (JXG)
    • Erdheim-Chester disease (ECD)
    • Rosai-Dorfman disease (RDD)
    • Histiocytic sarcomas

To refer a patient to this clinic, physicians should email histiocytosisconsult@stjude.org.

The benefit for patients and families includes: 

St. Jude doctor treating patient

Receive Expert Consultation

The consult clinic provides optimal treatment recommendations to referring physicians and their patients. Our multidisciplinary team includes specialists in oncology, dermatology, endocrinology, neurology, orthopedic oncology and cancer genetics.

Connect with Other Families

LCH and other histiocytic disorders are very rare, which can make it difficult for patients’ families to connect with one another. The St. Jude Pediatric and Adolescent Histiocytosis Consult Clinic brings patients and families together for an opportunity to share their experiences and challenges and provide support.

Learn about Resources

In addition to the consultation, patients’ families are invited to an educational seminar to meet with experts in histiocytosis.