Health Care Providers

Understand PNH to improve patient care
Paroxysmal nocturnal hemoglobinuria (PNH) is so infrequently seen by most clinicians that many do not include it in their initial differential diagnoses.

Additionally, PNH has symptoms that may be similar to those of other diseases, making a correct diagnosis challenging. Some estimates suggest that an average of 2.5–3 years elapse before patients are properly diagnosed. [1-4] 

Your source for everything PNH
Our goal at PNHSource is to help physicians better understand this disease to aid in timely diagnosis and treatment.

On this site you can:

• Read up on the signs and symptoms of PNH
• Learn who should be screened for PNH and techniques to aid in your diagnosis
• Find out how to enroll your patients in the PNH Registry, an international observational study on the natural history and management of PNH
• Learn about the EXPLORE Diagnostic Study, a multicenter study examining the frequency and clinical characteristics of PNH in patients with aplastic anemia, myelodysplastic syndrome (MDS), and other bone marrow failure disorders
• Find links to resources and published articles about PNH

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Bookmark www.PNHSource.com and visit often as we continue to expand the site to provide comprehensive information and resources for the PNH community.

References: 1. Socié G, Mary J-Y, de Gramont A, et al. Paroxysmal nocturnal haemoglobinuria: long-term follow up and prognostic factors. Lancet. 1996;348:573-577. 2. Hillmen P, Lewis SM, Bessler M, Luuatto L, Dacie JV. Natural history of paroxysmal nocturnal hemoglobinuria. N EngI J Med. 1995;333:1253-1258. 3. Ware RE, Hall SE, Rosse WF. Paroxysmal nocturnal hemoglobinuria with onset in childhood and adolescence. N EngI J Med. 1991;325:991-996. 4. Dacie JV. The Haemolytic Anaemias, Congenital and Acquired. Part IV. New York: Grune & Stratton; 1967.