Living with Hereditary Angioedema Can Be Frightening

Hereditary angioedema (HAE) is a rare genetic disease caused by a deficiency or dysfunction of a protein called C1 esterase inhibitor. HAE can cause swelling in certain parts of the body, such as the stomach, hands, and face, which can be painful and, in some cases, life threatening.

August 31st, 2017

Margaret Mary Conger, a member of CSL Behring’s Patient Engagement and Reimbursement team, recently sat down with Tad Rockwell, hereditary angioedema patient, clinical trial participant and passionate advocate, who spoke candidly about his long and scary road to diagnosis and treatment.

Tad Rockwell, who battled hereditary angioedema since he was a child, enjoys making breakfast for his family.

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Putting Patients First: Why We Partner with Advocacy Groups

By Dr. Lutz Bonacker

August 24, 2017

At CSL Behring we have been working collaboratively with patient organizations for years, informed by our core value that patients come first. Our CEO Paul Perreault puts it this way: “If you take care of the patients, the business takes care of itself.” It has also been our experience that the sole commitment of every patient group with which we collaborate is to the health and well-being of their members.

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Novel Ways of Using Immunoglobulin to Treat Disabling Neurological Disorders Are Being Explored

Researchers are targeting autoimmune epilepsy and chronic inflammatory demyelinating polyneuropathy.

By Karen MacPhail and Gabriela Espinoza, MD

July 25, 2017

As many as one billion people worldwide suffer from more than 600 neurological disorders, according to the World Health Organization and University of California, San Francisco, respectively. Of that number, it is estimated that 6.8 million people die each year from neurological disorders ranging from epilepsy to Alzheimer’s disease.

Neurological disorders affect the central nervous systems or the peripheral nervous systems and can impair the brain, spinal cord, peripheral nerve or neuromuscular function.

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Yesli’s Story: Income Inequality, Mountainous Terrain and a Shortage of Specialists Hamper Diagnosis and Treatment of Rare Diseases in Chile

By Juan Ambar

June 20, 2017

Yesli Jordán Paillacán overcame a childhood
made difficult by an undiagnosed
primary immunodeficiency.

When we first met Yesli Jordán Paillacán, she was a shy young girl living in Araucanía, Chile’s poorest region in terms of gross domestic product per capita where 80 percent of the population depends on the public health system. Yesli’s life had been continually disrupted by frequent hospitalizations that typically lasted from five to 10 days, and by other health complications that dramatically affected her quality of life.

Access to care in rural areas
She could not attend school regularly, particularly in the winter, when weather conditions exacerbated her condition. Access to care for patients like Yesli in rural areas of Chile is complicated by the distances that often separate them from hospitals and health care centers. In rural areas patients must often travel over rugged mountainous terrain to receive medical treatment.

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