By Joseph Chiao, MD
February 23, 2017
As we look ahead to spring, which is always a busy time for all of us at CSL Behring, we join the hereditary angioedema (HAE) and rare disease communities around the world in celebrating the 10th international Rare Disease Day on February 28. Every year at this time, we proudly join with hundreds of patient organizations worldwide to raise awareness of rare diseases and their impact on people’s lives.
There are upwards of 7,000 rare diseases, with approved treatments for only 5% of these. HAE, a rare and potentially life-threatening genetic condition, occurs in about 1 in 10,000 to 1 in 50,000 people. People with HAE can have considerable swelling episodes referred to as angioedema, which can affect many parts of the body, including the face, abdomen, larynx and extremities.
Paradigm shift from doing to and for patients, to a more engaging environment of doing with patients
By Anthony Farina
Nearly every healthcare organization talks about putting patients first, but what does patient centricity really mean? CSL’s CEO and Managing Director Paul Perreault, who recently addressed the subject of patient-centric leadership at the 14th eyeforpharma Philadelphia Summit, says it’s about innately understanding the big picture, in other words the patient’s whole story, not just his or her medical condition.
“It requires understanding patients’ specific needs, what they’re going through, and the types of stresses these conditions place on them and their families,” Perreault says. “It also means providing not only treatment but resources and emotional support designed to improve outcomes and enhance quality of life and wellbeing.”
Hereditary Angioedema patients are a global family tied together by the need to reduce the time it takes to diagnose and treat this rare disease.
By Henrik Balle Boysen
Hereditary Angioedema International (HAEi) is a non-profit global network of national hereditary angioedema (HAE) patient associations for C1-Inhibitor deficiencies. We are dedicated to raising awareness of HAE and the people it affects around the world.
We strive to improve the time it takes to diagnose HAE and facilitate access to and reimbursement for life saving HAE therapies, which will enable lifelong health for all patients no matter where they live.
By Janet Reimund
February 26, 2016
Over the years I’ve interacted with many patients and learned firsthand the importance of raising awareness of rare diseases and their impact on people’s lives. While rare diseases really aren’t so rare – there are more than 6,000 classifications according to the European Organization for Rare Diseases – it can take a person more than seven years and eight doctors to be diagnosed.
At CSL Behring, we have a long history of delivering on our promise to patients with rare diseases, including providing supportive services as well as our lifesaving therapies. We understand the meaningful difference that supportive services can make in the lives of patients and those who care for them.
February 19, 2016
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Sources: EURORDIS, NORD, PhRMA, NIH, FDA