For Patients

PNH: paroxysmal nocturnal hemoglobinuria

Paroxysmal nocturnal hemoglobinuria (PNH) is a serious, but rare, disease that can cause thrombosis.  Learn more at these links:

PNH information for patients -  from PNH Source, sponsored by Alexion Pharmaceuticals

PNH definition -  from the National Institutes of Health

What is PNH?   - from PNH Source

Signs and Symptoms of PNH   - from PNH source

PNH information -  from Aplastic Anemia & MDS International Foundation

Diagnosis and management of PNH - from PNH source

Soliris® (eculizumab) -  a treatment therapy approved for paroxysmal nocturnal hemoglobinuria (PNH), Alexion Pharmaceuticals

PNH Guide - from Aplastic Anermia & MDS International Foundation

Information for newly diagnosed PNH patients - from the PNH Research and Support Foundation

Resources for patients with PNH -  includes experiences from patients, resources, where to go for support;  from PNH source

PNH Information - from the National Organization for Rare Disorders

PNH Support Group - an online support group/discussion board

 PNH Regional meetings -  meetings of patients and family from the National Organizations for Rare Disorders

OneSource patient support  program - OneSource is a program provided by Alexion Pharaceuticals and staffed by a Nurse Case Manager that provides patients with education, assistance with coverage issues and funding options, and treatment support.