The national tragedy of HIV/AIDS in the hemophilia community catapulted NHF into the spotlight as the prime advocate for a safer blood supply and blood products. While blood and blood product safety has dramatically improved over the last 20 years, the risk remains for known and unknown potential infectious agents and pathogens that threaten the blood supply and blood products. Throughout its work on blood safety, NHF's stance has never wavered.
NHF's commitment to blood product safety drives a strong nationwide research effort into improved treatments, including improved protein-free recombinant clotting factor products and gene therapy. Blood safety must and will always be a top NHF priority.
In more recent years, our advocacy and monitoring have also focused on the need for all of the treatments used by people with bleeding disorders – plasma-derived, recombinant, non-factor products, as well as potential gene and novel therapies that could soon come to market.
Patient Notification System
The Patient Notification System was established to provide information to patients and healthcare providers on withdrawals or recalls of plasma-derived and recombinant therapies. The Patient Notification System, led by the Plasma Protein Therapeutics Association, was formed and funded by product manufacturers, with feedback from patients and their families. It is a free, confidential service that is available 24 hours a day. The Patient Notification System is operated by Stericycle, Inc., an independent organization that specializes in pharmaceutical notifications.
Each person who registers with the Patient Notification System a preferred notification method—email, phone or fax. All participants also receive a first-class letter to ensure the information was received. Participants can also select which products they wish to be notified about.
NHF encourages everyone to register so they can be directly notified when adverse conditions occur with blood products.
To register with the Patient Notification System, call: 888.873.2838 (888-UPDATE-U) or visit the website: www.patientnotificationsystem.org.