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Paroxysmal Nocturnal Hemoglobinuria Treatment

Paroxysmal nocturnal hemoglobinuria (PNH) is a rare disease of the blood and bone marrow. PNH can appear suddenly (paroxysmal). Because the symptoms often manifest during night (red urine), the name nocturnal comes from. Patients with PNH have urine (pee) that has parts of blood cells in it (hemoglobinuria). 

Children with aplastic anemia, have a higher risk of developing PNH.  

Learn more about paroxysmal nocturnal hemoglobinuria on the Together by St. Jude™ online resource.  

Treatment of paroxysmal nocturnal hemoglobinuria

Treatment of PNH depends on your child’s symptoms and how severe the disease is. Some children just need to be watched closely. Others need treatment to protect their red blood cells and lower their risk of blood clots.  

Treatments for PNH include:  


Paroxysmal nocturnal hemoglobinuria clinical trials

St. Jude offers clinical trials and research studies for children, teens, and young adults with blood disorders. Learn more about clinical research at St. Jude. 

There are no open clinical trials for paroxysmal nocturnal hemoglobinuria at this time.

Browse open clinical trials

Paroxysmal nocturnal hemoglobinuria care at St. Jude

St. Jude provides the highest quality of care for patients with PNH:

  • Children with blood disorders benefit from comprehensive, state-of-the-art care. This includes stem cell (bone marrow) transplants if needed and access to promising new treatments.
  • St. Jude also develops collaborative research partnerships with the National Institutes of Health and other institutions throughout the world.
  • The nurse-to-patient ratio at St. Jude is unmatched — averaging 1 nurse for every 3 patients in hematology and oncology, and 1:1 in the Intensive Care Unit.
  • Our hematology program works with the patient’s hometown doctors to arrange lifelong monitoring and disease follow-up for patients with certain blood disorders. Families also receive thorough follow-up care.

More reasons to choose St. Jude for care include:

  • At St. Jude, we have created an environment where children can be children and families can be together. 
  • St. Jude patients and families never pay for services authorized by St. Jude. 
  • The nurse-to-patient ratio at St. Jude is unmatched — averaging 1 nurse for every 3 patients in hematology and oncology, and 1:1 in the Intensive Care Unit.
  • St. Jude offers a dedicated team of specialists to meet the needs of children, including:
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Seeking treatment at St. Jude

Patients accepted to St. Jude must have a disease we treat and must be referred by a physician or other qualified medical professional. We accept most patients based on their ability to enroll in an open clinical trial.

How to seek treatment

Contact the Physician / Patient Referral Office

Call: 1-888-226-4343 (toll-free) or 901-595-4055 (local)  | Fax: 901-595-4011 | Email: referralinfo@stjude.org | 24-hour pager: 1-800-349-4334

 

Learn more