CSL Behring is committed to saving lives and improving the quality of life for people with rare and serious diseases worldwide. This commitment is reflected in our support of programs and activities for patients with rare plasma-protein related diseases including bleeding disorders, primary immune deficiencies and Alpha1-proteinase inhibitor deficiencies.
We collaborate with patient advocacy platforms, both disease-specific and umbrella organizations, 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.
On June 9, 2009, the Council of the European Union adopted the proposed Council Recommendation on European Action in the Field of Rare Diseases. This recommendation calls upon Member States to implement national plans for rare diseases before the end of 2013. For rare disease patients in Europe, the Council Recommendation represents an important milestone as it calls for concerted action at EU and national level.
The Council Recommendation is important because it calls for concerted action at EU and national level in order to:
- Ensure that rare diseases are adequately coded and classified
- Enhance research in the field of rare diseases
- Identify Centres of Expertise by the end of 2013 and foster their participation into European Reference Networks
- Support the pooling of expertise at European level
- Share assessments on the clinical added value of orphan drugs
- Foster patient empowerment by involving patients and their representatives at all stages of the decision-making process
- Ensure the sustainability of infrastructures developed for rare diseases
This adoption marks the culmination of a series of legislative declaratory acts which have paved the way towards the recognition of rare diseases as a public health priority and as an area of unique European added-value for community action.
Comments from EURORDIS Rare Diseases Europe
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CSL Behring also supports International Rare Disease Day. The next Rare Disease Day will take place on February 29, 2012. The day was established to raise awareness of rare disease and their impact on patients' lives by policy makers and the public at large. Rare Disease Day reinforces the importance of rare diseases as a public health priority.
Learn more about Rare Disease Day: