As a Diamond Sponsor of HAE Day on May 16, 2014, CSL Behring is proud to continue its partnership with HAEi, the International Patient Organization for C1 Inhibitor Deficiencies, and patient organizations throughout the world. HAE, or, hereditary angioedema, is a rare, potentially fatal swelling disorder caused by a deficiency of C1-INH, a type of protein.
HAE Day is a global event intended to support better care and an earlier and more accurate diagnosis for HAE patients. The day focuses on engaging and educating the general public and the medical community while raising funds for further national and international HAE initiatives. HAE Day awareness events strengthen the voice of patients and unite HAE patient organizations globally.
"HAE is a serious, sometimes life-threatening medical condition that appears in all age groups in all parts of the world," said Paul R. Perreault, Chief Executive Officer of CSL Limited, parent company of CSL Behring. "Often, people who have undiagnosed HAE struggle with symptoms for years before receiving an appropriate diagnosis and effective treatment. Others go their entire lives not realizing their condition even has a name. Building broad public awareness of HAE is an important key to solving these issues for people. Therefore, CSL Behring is proud to continue our support of HAE Day at the international level, and hope our collaborative efforts can increase awareness and effective clinical management of this debilitating disorder."
CSL Behring HAE Day activities will take place throughout the Americas, Europe and Asia. Activities planned for this year include:
- Global participation in the www.HAEDay.org "Send a Smile" social media event
- Local awareness-raising events at the CSL Behring offices and manufacturing plants, and at CSL Plasma collection centers
- Collaboration with the German HAE patient organization to raise awareness and emphasize the importance of family screening in HAE patients
- Launch of allabouthae.co.uk and facesofhae.co.uk –a dedicated HAE micro-site in collaboration with HAE UK to provide helpful tips and advice direct from people living with HAE in the UK.
- Sponsoring of an HAE symposium at the Second Latin-American Congress on Hereditary Angioedema in Veracruz, Mexico
- Self-infusion training in collaboration with the Argentinean HAE patient organization
- Donations to and support of various HAE patient organizations including those in Brazil, Japan, Mexico, the Scandinavian countries and Spain.
In addition, CSL Behring is a Gold Sponsor of the international HAE conference in Washington, D.C. (May 15-18). As a part of its sponsorship, CSL Behring will provide conference attendees with information regarding the company and its HAE programs.
For more information about HAE Day 2014, please visit www.haeday.org.
About Hereditary Angioedema
HAE is a rare genetic disorder caused by a deficiency of C1 Esterase Inhibitor. It is inherited in an autosomal dominant manner. Symptoms of HAE include episodes of edema – or swelling – in the face, abdomen, larynx and extremities. Patients who have abdominal attacks of HAE can experience episodes of extreme pain, diarrhea, nausea and vomiting caused by swelling of the intestinal wall. HAE attacks that involve the face or throat can result in airway closure, asphyxiation and, if untreated, death. Diagnosis of HAE requires a blood test to confirm low or abnormal levels of C1 Esterase Inhibitor.
About CSL Behring
CSL Behring is a leader in the plasma protein therapeutics industry. Committed to saving lives and improving the quality of life for people with rare and serious diseases, the company manufactures and markets a range of plasma-derived and recombinant therapies worldwide.
CSL Behring therapies are used around the world to treat coagulation disorders including hemophilia and von Willebrand disease, primary immune deficiencies, hereditary angioedema and inherited respiratory disease, and neurological disorders in certain markets. The company’s products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic diseases in the newborn. CSL Behring is a subsidiary of CSL Limited, a biopharmaceutical company with headquarters in Melbourne, Australia. For more information, visit www.cslbehring.com. CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma.
Sheila A. Burke
Director, Communications & Public Relations
Worldwide Commercial Operations