Patients & Caregivers

Being diagnosed with PNH (paroxysmal nocturnal hemoglobinuria) is a life-changing event. But as difficult as this news can be, it is important to realize you are not alone.

Though PNH is a very rare disease, there are others who understand what you are going through. A worldwide network of concerned physicians, nurses, and researchers is working hard to find new treatments and deliver the best possible care for patients with PNH. The Internet can be a great resource in helping you to find information, support, and a sense of community with others who share the PNH diagnosis. On this site you can:

• Learn more about PNH
• Find out how you can be part of the PNH Registry, a research initiative designed to help physicians better understand PNH, and learn from the collective knowledge of other physicians who are treating PNH
• Learn about the EXPLORE Diagnostics Study, a multicenter study designed to evaluate the frequency and clinical characteristics of PNH in patients with aplastic anemia, myelodysplastic syndromes, and other bone marrow
  failure syndromes
• Find resources and links to other websites that can provide information and support about PNH

Be sure to bookmark PNHSource.com as we expand the site to provide comprehensive information and resources for the PNH community.

Learn more about PNH