Rare Disease Day 2012

The theme of Rare Disease Day 2012 is Solidarity, and this year's focus is on the importance and the need for collaboration and mutual support in the field of rare diseases. CSL Behring is once again collaborating with EURORDIS and NORD in supporting the fifth annual Rare Disease Day on Leap Day, February 29, 2012. The annual campaign raises international awareness of rare disease and the impact it has on patients' lives.

The fifth international Rare Disease Day is coordinated by EURORDIS and organized with rare disease national alliances in 25 European countries. On this day, hundreds of patient organizations from more than 40 countries worldwide are organizing awareness-raising activities around the slogan, "Rare but strong together."

You are not alone
At CSL Behring we are proud to be "Friends of Rare Disease Day." We understand that one of the greatest challenges people with rare diseases face is the isolation that results from being one of the very few with a rare medical condition, and in many instances, from going undiagnosed for years.

Our advocacy programs make a difference by bringing individuals with rare diseases together so they may raise their voices as one. By acting collectively, they can make themselves heard by those who create public policies that impact access to health care. CSL Behring offers a variety programs that help patients become strong advocates for themselves:

Examining important issues
CSL Behring publishes the Key Issues Dialogue series which brings together thought leaders from the medical, scientific and patient advocacy communities in Europe and the US to exchange information and ideas and to address barriers and solutions to access to healthcare.

Collaboration

The need for collaboration and mutual support among patients, their health care providers and families in a difficult global economy is vital to ensuring:

access to correct diagnosis
increased availability of information
improved scientific knowledge such as registries and databases, international research platforms, multi-center clinical research, development of drugs and diagnostic tests; training of professionals
availability of specialized social services to help improve the quality of the lives of people living with a rare disease and their families such as help lines, respite care services and therapeutic recreation programs
increased provision of appropriate quality healthcare (international reference networks of centers of expertise and multidisciplinary care)

Helpful links to rare disease organizations

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Rare Disease Day 2012