The Rarity of Hereditary Angioedema Makes the Disease Especially Dangerous

That’s why awareness opportunities such as HAE Day are so important.

By Debra Bensen-Kennedy, MD

May 15, 2017

Like many physicians, I learned about hereditary angioedema (HAE) during a brief moment in my years of education and training. Had I not worked at CSL Behring, HAE would likely never cross my mind again, given its rarity.

Medical professionals juggle troves of clinical information, and on HAE Day we help keep the disease top of mind. Because HAE attacks can be life-threatening if they occur in the throat, it is extremely important for healthcare professionals to know what to do when they encounter a patient, even if their only other experience with the condition was during their medical training.

While this rare genetic condition may affect only a small number of people…its impact is large.

Today, CSL Behring joins the global HAE community in celebrating HAE Day. While this rare genetic condition may affect only a small number of people – about 1 in 10,000 to 1 in 50,000 – its impact is large. HAE can be debilitating when it causes areas of the body to swell and it can even be fatal.

HAE is caused by lack of – or malfunctioning – C1-esterase inhibitor (C1-INH), the primary control protein of the so-called complement system that regulates inflammation and vascular permeability.

The physical and psychological effects of HAE can be life altering: people with the disorder can have swelling episodes, referred to as angioedema, anywhere on their body, including extremities, face, abdomen, genitals and larynx. During an attack, they often must stop daily activities, including going to school or work. As a result, many people with HAE live in constant fear of their next attack.

For patients and caregivers, HAE Day is an important milestone because it highlights the impact of this rare disease on people’s lives, giving them a voice and a shared mission. HAE Day lets HAE patients be seen, and it encourages the medical community, policymakers and the public to take notice of them.

According to the U.S. Hereditary Angioedema Association (HAEA), there are three ways people can get involved in HAE Day: Raise money; Raise awareness; Raise enthusiasm. CSL Behring is participating in all three ways.

HAE Day lets HAE patients be seen, and it encourages the medical community, policymakers and the public to take notice of them.

We’re helping to raise awareness and enthusiasm by giving the HAE community an easy way to get involved by educating their networks and the public. On CSL Behring’s AllAboutHAE Facebook page and company Twitter page, we are encouraging the HAE community to participate in an awareness challenge that will drive donations to the HAEA.

CSL Behring will donate $10, up to a total donation of $5,000, to the HAEA for every reaction (such as a ‘like’ or ‘love’) or share/retweet on our special HAE Day posts from the All About HAE Facebook community, CSL Behring Twitter account and CSL Behring LinkedIn page.

We hope this awareness challenge will inspire others, as the impact of HAE on people – and their strength to persevere and overcome challenges – inspires us all year to advance care and to unlock the potential of biotherapies.

CSL Behring has been a leader in biotherapeutics for more than 40 years. Our celebration of HAE Day is an extension of our commitment to R&D in HAE as well as in the other rare diseases, and of our promise to patients to deliver life-saving medicines regardless of market size.

Our celebration of HAE Day is an extension of our commitment to R&D in HAE

We’re proud to offer the HAE community a long-standing therapy option to stop HAE attacks, and we will continue to develop innovative therapies for HAE in the future.

We hope you’ll join us in giving a voice to the HAE community: visit the AllAboutHAE Facebook page and check out CSL Behring on Twitter to join in the effort to raise awareness about HAE by liking and sharing information about HAE.

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Dr. Bensen-Kennedy is CSL Behring’s Vice President Medical Affairs North America.

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