Pediatric Parents Virtual Support Group - 2026 - April
This virtual support group is designed to support pediatric parents whose children have been diagnosed with aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Learn about PNH (Paroxysmal Nocturnal Hemoglobinuria)
Original Publication Date
Article Source
AAMDSIF Web Content
Recently, there has been increased mention of paroxysmal nocturnal hemoglobinuria (PNH) in the news and on social media. As part of our mission, the Aplastic Anemia and MDS International Foundation (AAMDSIF) works with leading PNH specialists to provide patients, their support…
Caner Saygin, MD
Institution
University of Chicago
Physician Status
accepting new patients
Primary Disease Area of Focus
Acute Myeloid Leukemia (AML)
Aplastic Anemia
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Fatigue Management
Topic(s)
Living Well with Bone Marrow Failure
Presenter(s)
Timothy Pearman, PhD
Jenny Finkel
In this webinar, Dr. Tim Pearman discusses fatigue and how it can be best managed. Jenny Finkle demonstrates some gentle exercises you can do to increase your energy level. This was an interactive session.
Advances in Treating PNH
Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Jamile M. Shammo, MD, FASCP, FACP
In this webinar, Dr. Jamile Shammo discusses the latest in PNH research and treatments.
Improvements in hematologic markers and decreases in fatigue with pegcetacoplan for patients with paroxysmal nocturnal hemoglobinuria and mild or moderate anemia (hemoglobin ≥10 g/dL) who had received eculizumab or were naive to complement inhibitors
Background: Although complement component 5 inhibitors (C5is) eculizumab eculizumab: Eculizumab (Soliris ®) is given as an IV into a vein at the doctor’s office or at a special
Development of a target concentration intervention to individualize paroxysmal nocturnal hemoglobinuria treatment with pegcetacoplan
Pegcetacoplan Pegcetacoplan: EMPAVELI® is the first PNH treatment that binds to complement protein C3.