paroxysmal nocturnal hemoglobinuria (PNH) | Page 15 | Aplastic Anemia and MDS International Foundation

paroxysmal nocturnal hemoglobinuria (PNH)

Deep sequencing reveals stepwise mutation acquisition in paroxysmal nocturnal hemoglobinuria

Author(s): 
Shen W, Clemente MJ, Hosono N, Yoshida K, Przychodzen B, Yoshizato T, Shiraishi Y, Miyano S, Ogawa S, Maciejewski JP, Makishima H
Primary Author: 
Shen W
Journal Title: 
J Clin Invest
Original Publication Date: 
Sep 2014

Clinical Trials and Children

If your child has a bone marrow failure disease and you are considering a clinical trial, there are important things you need to know. For example, clinical trials in children, by law, must provide the potential for at least a minimal benefit. This section provides information and guidelines to help you make an informed choice about clinical trial participation for your child.

Complement in paroxysmal nocturnal hemoglobinuria: exploiting our current knowledge to improve the treatment landscape

Author(s): 
Mastellos DC, Ricklin D, Yancopoulou D, Risitano A, Lambris JD
Primary Author: 
Mastellos DC
Journal Title: 
Expert Rev Hematol
Original Publication Date: 
Sep 2014

Patient, Educator, and Volunteer

Person's Name: 
Stephen King

A PNH survivor for more than 25 years, Stephen King speaks about his life as a patient and an advocate in both formal and informal roles -- and offers advice for newly diagnosed PNH patients.

 “I’m an engineer with a problem-solving orientation,” says the medical software manager from Atlanta, Georgia. “After my diagnosis, I thought, now that you know what it is, let’s fix it. It took a little time to sink in that there was no quick fix, and I had to learn more about it.”

Early Diagnosis, Treatment and Emphasis on Self-Advocacy

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