North American Pediatric Aplastic Anemia Consortium (NAPAAC)

-
Investigator: James Huang, MD
Sponsor: Boston Children's Hospital

Location(s): United States

Description

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. AA&MDSIF provides answers, support and hope to thousands of patients and their families around the world.

We are a patient-focused, patient-centered organization, serving patients and families throughout the three phases of bone marrow failure diseases:

  • the life changing phase of diagnosis
  • the life threatening phase of treatment
  • the life long phase of living with a chronic disease

Acquired aplastic anemia is a rare, life threatening disease affecting children and young adults that causes the bone marrow to stop making blood cells.  As with all rare diseases, there is a relative lack of research to develop cures and guide the management of affected patients. The North American Pediatric Aplastic Anemia Consortium (NAPAAC) was formed by leading physician researchers with expertise in bone marrow failure syndromes, including severe aplastic anemia (SAA), in order to collaboratively improve the care of affected patients.