Rare Disease Report To Present Live Coverage Of Paroxysmal Nocturnal Hemoglobinuria Awareness Week

Published: Sep 18, 2017

Two out of every million people in the United States are currently affected by Paroxysmal Nocturnal Hemoglobinuria

CRANBURY, N.J.--(BUSINESS WIRE)--Rare Disease Report® (RDR), the digital component of Rare Disease Communication® will provide live coverage of Paroxysmal Nocturnal Hemoglobinuria (PNH) awareness week from September 17 to 23. RDR will provide readers with the latest information on the disease space, emerging research and ways to become an advocate.

“Blood clots, including deep vein thrombosis, are a common problem for people with PNH and they can be silent killers. Awareness leads to early detection and that timely recognition can get patients the necessary care.”

“We are thrilled to be part of PNH Awareness Week,” said James Radke, Ph.D., managing editor of Rare Disease Report. “Blood clots, including deep vein thrombosis, are a common problem for people with PNH and they can be silent killers. Awareness leads to early detection and that timely recognition can get patients the necessary care.”

Rare Disease Report® will share informational content on its website and social media platforms, to spread awareness and provide insights on PNH. This recognition week focuses on educating those who may not know about the disease and highlighting the hardships experienced by patients, family members, and caregivers.

PNH, an atypical and life-threatening disease of the blood, affects 2 people per million in the United States typically between the ages of 35-40, according to the Seattle Cancer Alliance. This rare condition is caused by a genetic mutation in which red blood cells are destroyed due to the extremely low level of essential membrane proteins that regulate complement proteins. Available therapy for PNH includes bone marrow transplant, and the U.S. is currently awaiting an FDA decision on Soliris (eculizumab), which treats some of its symptoms. For more information, visit: www.raredr.com/news/europe-approves-soliris-for-myasthenia-gravis

Be sure to visit Rare Disease Report® at www.raredr.com and on Facebook and Twitter throughout PNH Awareness Week.

About Rare Disease Communications®

Rare Disease Communications® is a health care communications and media company focused on the rare disease community and dedicated to raising awareness of rare diseases and orphan drugs so that patients will be diagnosed and treated more efficiently. Rare Disease Communications® is part of the Michael J. Hennessy Associates, Inc. family of businesses, based in Cranbury, N.J. MJH Associates is dedicated to improving quality of life through healthcare education, research and communication. To learn more about MJH Associates, visit http://www.mjhassoc.com and for Rare Disease Communications, visit: www.raredr.com

Rare Disease Report® Media:
Theresa Burek, 609-716-7777
tburek@mjhassoc.com
or
Surabhi Verma
sverma@mjhassoc.com

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