CSL Behring joins the global HAE community today in recognition of the fifth annual hae day :-), an initiative led by HAEi, the international patient organization for C1-inhibitor deficiency, along with the support of its national member organizations, including the US Hereditary Angioedema Association (HAEA). HAE Day is a global awareness event that aims to support earlier, more accurate diagnosis and better care for HAE patients.
CSL Behring is a proud supporter of hae day :-), May 16, and to continue its partnership with HAEi. Hereditary angioedema, better known as HAE, is a rare and potentially life-threatening condition in which inadequate or non-functioning C1-inhibitor blood protein can result in swelling in the abdomen, hands, feet, face and airway.
CSL Behring hae day :-) activities will take place globally and locally and include:
- Global participation in the “Send a Smile” [www.HAEDay.org] and the virtual “Global HAE Walk” [www.haei.org/steps] social media events
- Local awareness-raising events at CSL Behring offices and manufacturing plants, and at CSL Plasma collection centers
- Sponsorship of the US Hereditary Angioedema Association (HAEA) 5K run/walk series, HAE In Motion. Seven events will take place throughout the year, aiming to raise awareness and improve the quality of life of those afflicted with HAE.
- Collaboration with the German HAE patient association to raise association to raise awareness of HAE through a new, sponsored video, “Wege aus dem irrgarten” (or “A way out of the maze”), that draws attention to the often long ordeal to diagnosis and treatment.
- A BioBlog feature post, “World hae day :-) – Many Faces, One Family,” written by HAEi executive director, Henrik Balle Boysen.
- Collaboration with national patient associations to raise awareness and emphasize the importance of family screening in HAE patients.
CSL Behring is also a Gold Supporter of the 2016 HAE Global Conference in Madrid, Spain (May 19-22). This conference gives CSL Behring the opportunity to deliver on its promise to improve care and enhance patients’ lives by connecting with physicians and patient representatives to discuss on how to raise awareness and access to therapies. The sponsorship also helps supports travel grants to bring patients to the conference.
For more information about hae day :-) 2016, please visit www.haeday.org.
(Source: CSL Behring)