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PNH Source

Last Update:5/11/2018
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County:Nationwide
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Website:www.PNHsource.com
Mission
To provide up to date information on PNH (paroxysmal nocturnal hemoglobinuria) for patients and healthcare providers.
Program Description

PNHsource is an online directory of medical information on PNH for patients and healthcare providers, including access to current treatment guidelines and clinical trials.  The PNH Patient Registry is the first comprehensive database directed to clinical research and quality of life in patients with PHN.  Your physician can enroll you into the database for onging research study.

PNHsource provides educational and emotional support to patients with PNH.  In addition, this website provides emotional support by educating patients/caregivers on living with PNH, talking with others about the disease, and by providing links to support networks.  This is a chronic disease that can become life-threatening in severe cases, so emotional support is important.

Financial
Services
Blood disorders
Bone Marrow Diseases/Transplant
Counties Serviced
Nationwide
ABOUT SPECIAL KIDS RESOURCE DIRECTORY
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail: familynetw@aboutspecialkids.org

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.