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.
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