Driven to raise awareness of rare diseases

Driven to raise awareness of rare diseases

Employees in the US gathered to "Send a Smile" to support HAE patients.

Throughout the year, there are many awareness days, months and events taking place in the patient communities CSL Behring serves. But one day in May, HAE (Hereditary Angioedema) Day brings together employees and activities around the world as we aim to call attention to this rare, potentially life-threatening condition. HAE is a blood protein deficiency that can result in swelling in the abdomen, hands, feet, face and airway.

In 2016, CSL Behring commemorated HAE Day on 16 May with partnerships, sponsorships and awareness events from the US to Germany and beyond. HAE Day is led by the international patient organisation HAEi, and the theme for the day is to "Send a Smile". Employees across the world gathered to send their smiles to HAE patients to show support (see accompanying photo). They also participated in the virtual "Global HAE Walk" where walkers could report their distance walked to the HAEi website where over 12,000,000 steps were registered by individuals and groups wanting to be part of the HAE awareness movement.

In addition to the global virtual walk, the US HAE Association organised seven "HAE in Motion" 5km runs/walks throughout the year. CSL Behring not only sponsored the program and all seven events, but several employees participated.

In Germany, CSL Behring collaborated with the patient association to sponsor a video, "Wege aus dem irrgarten" (A way out of the maze) that draws attention to the often long ordeal to diagnosis and treatment of HAE. In Spain, CSL Behring served as a Gold Supporter of the 2016 HAE Global Conference and connected with physicians and patient representatives to discuss how to raise awareness and access to therapies. The sponsorship also helps support travels grants to bring patients to the conference.