CSL Behring collaborates with rare disease patient organizations at the international, regional, national and local levels to promote quality medical care and services and to improve and expand educational and outreach efforts. Through these partnerships, we strive to raise public awareness and to enhance appropriate public policies for rare diseases.
In Europe, CSL Behring partners with EURORDIS, the European Organization for Rare Diseases. EURORDIS is a patient-driven alliance of representatives from patient organizations and others active in the field of rare diseases. EURORDIS’ mission is to build a strong pan-European community of patient organizations and people living with rare diseases, to be their voice at the European level, and -- directly or indirectly -- to fight against the impact of rare diseases on their lives.
As a Member of the EURORDIS Round Table of Companies (ERTC) at the Emerald level, CSL Behring gave EURORDIS an unrestricted grant to support its communications activities. In addition, CSL Behring also awarded EURORDIS a three-year educational grant for the development of a new European rare diseases policy project. This project is the first European initiative designed to collect patient opinions on rare disease policies. It is intended to build consensus on preferred public health policy scenarios.
In the United States, CSL Behring partners with the National Organization for Rare Disorders (NORD), an umbrella organization of patient advocacy organizations dedicated to individuals with rare diseases. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. CSL Behring serves on the NORD Corporate Council, a group of innovative companies who have and are developing therapies for the treatment of rare disorders, which helps to find commonality and discuss legislative activity to ensure the continued development of rare disease therapies. CSL Behring has provided NORD with unrestricted grants in support of their annual Rare Disease Summit and to bolster its government affairs capabilities.
CSL Behring has been recognized by NORD over the years for manufacturing cutting-edge therapies, winning its Industry Innovation Award on multiple occasions, most recently in 2017 for the licensure of IDELVION®, a long-lasting recombinant factor IX therapy for the treatment of hemophilia B.