Recently, there has been increased mention of
paroxysmal nocturnal hemoglobinuria
paroxysmal nocturnal hemoglobinuria:
(par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A…
(PNH) in the news and on social media. As part of our mission, the
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
and MDS International Foundation (AAMDSIF) works with leading PNH specialists to provide patients, their support networks, and the public with trusted and up-to-date educational resources about PNH.
According to Dr. Carlos DeCastro, PNH expert and member of the AAMDSIF Medical Advisory Board, "PNH is a lifelong rare complex blood disorder that requires management by a PNH specialist. It is important for patients and their support networks to learn all they can about PNH and their treatment options. Understanding PNH empowers patients to make the best decisions for their health care."
AAMDSIF encourages you to click on the following topics to learn about PNH and to share this message with family and friends.
What is PNH?
Learn the Signs and Symptoms of PNH
Understand PNH Treatments
What is the Risk Evaluation and Mitigation Strategy (REMS) US FDA Drug Safety Program?
Order a PNH Patient Toolkit