Paroxysmal Nocturnal Hemoglobinuria (PNH)
Topic(s)
Living Well with Bone Marrow Failure
Managing Your Treatment
Presenter(s)
Jorg Dietrich, MD, PhD
In this webinar, Dr. Jorg Dietrich will discusses the diagnosis of brain fog/chemo brain and how patients can manage this symptom of disease and its treatments.
Managing PNH Complications Webinar
Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Srinivasa Reddy Sanikommu, MD
In this webinar, Dr. Srinivasa Sanikommu discusses the management of PNH and complications experienced by patients.
What is PNH? Webinar
Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Srinivasa Reddy Sanikommu, MD
In this webinar, Dr. Srinivasa Sanikommu discusses the diagnosis of PNH and current treatments available to patients.
PNH Virtual Support Group - 2026 September
AAMDSIF is pleased to announce that we will host a support group for patients diagnosed with PNH. The group is hosted by AAMDSIF and will be monitored to ensure the privacy and safety of our participants.
Non-therapeutic Study Non-therapeutic Study: The purpose of a non-therapeutic study is to increase the understanding of a disease or condition through observation, data collection, or other methods. A non-therapeutic study does not provide treatment or intervention for participants. This type of research contributes to general knowledge that may benefit others in the future by improving treatment or developing new therapies. PLEDGE – Patients’ Long-term Experience on VOYDEYA (Danicopan): Gathering Evidence in the Real-World
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Status
Recruiting
Study Date (Range)
-
Bone Marrow Disease(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Age Group
18 years and older
The IRB-approved observational Phase IV PLEDGE study is set-up to collect real-world data on adult patients with Paroxysmal Nocturnal Hemoglobinuria (PNH) with symptomatic extravascular hemolysis who recently started VOYDEYATM (danicopan) as add-on treatment to ULTOMIRIS®…
Managing PNH Treatments - 2025 San Francisco Bay Area Patient and Family Conference
Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Bart Scott, MD
Bart Scott, MD, explains various treatments for PNH, or Paroxysmal Nocturnal Hemoglobinuria. He discusses possible side effects and treatment methods.
What is PNH? Recorded Session from the 2025 San Francisco Bay Area Patient and Family Conference
Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Bart Scott, MD
Learn from Dr. Bart Scott in this recorded session. Find out all the symptoms and science for a diagnosis of PNH, or Paroxysmal Nocturnal Hemoglobinuria to answer your most pressing questions.
Transplant and GVHD: Aplastic Anemia and PNH - 2025 San Francisco Bay Area Conference
Topic(s)
Aplastic Anemia
Bone Marrow Transplant
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Judith Shizuru, MD
Dr. Judith Shizuru explains how Transplantation can be used to treat Aplastic Anemia and PNH. She discusses how GVHD, or Graft VS Host Disease, can occur after transplant as well.
Pediatric PNH - from the 2025 San Francisco Bay Area Patient and Family Conference
Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Satheesh Chonat, MD
Dr. Satheesh Chonat explains the presentation of PNH, or Paroxysmal Nocturnal Hemoglobinuria, in children as well as its treatment.
Iptacopan Yields Meaningful Hemoglobin Improvements in Pretreated PNH Group
Original Publication Date
Article Source
External Web Content
Data from APPULSE-PNH may support oral iptacopan as a potentially practice-changing option in patients with paroxysmal nocturnal hemoglobinuria. "Results from APPULSE-PNH and previous trials establish oral iptacopan monotherapy as a potentially practice-changing treatment capable…
