Patients can make a difference in the development of future treatments and the improvement of outcomes by participating in research. Check out the sections here to discover if any of these options are suitable for you.
Clinical Trials and Studies feature bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… disease treatments and studies.
The Global PNH Patient Registry is more than a versatile online system that securely collects and stores data for medical research; it is an interactive dynamic participant-driven resource that can empower and unite the PNH community through shared knowledge.