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.
The AAMDSIF Summer Fellowship program awards students a $5000 grant to support their research, performed over a 10 week period under the mentorship of a seasoned scientist, to investigate topics related to bone marrow failure.
Gail J. Roboz, M.D. is a professor of medicine and Director of the Clinical and Translational Leukemia Programs at the Weill Medical College of Cornell University and the NewYork Presbyterian Hospital in New York City.
Amer Zeidan’s primary research interest is in
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