PNH Rare Disease Month Campaign launched

Rare Disease Day is the official international awareness-raising campaign for rare diseases which takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

PNH is an ultra-rare bone marrow failure disease in which red blood cells break apart.  Normal red blood cells are protected from coming under attack by the body’s own immune system by a shield of proteins. In PNH, that protein shield is missing.   Getting a PNH diagnosis can take time due to it’s rare nature.  Raising awareness is critical for both patients and physicians.

The PNH Rare Disease Month Campaign has now launched!

Click here for the campaign website

Click here for the digital article  – Why It’s Important to Recognize Signs of Rare Blood Disease – which includes a contribution from our Executive Director, Cindy Anthony.