You think you’re getting strong with those visits to the gym? Get a load of Karen Skalvoll.
The Norwegian woman suffers from alpha-1 antitrypsin deficiency, a rare disease that makes breathing feel like sucking in air through a coffee stirrer, CSL Behring—a biotechnology company—reports in its brand journalism site Vita.
Yet Skalvoll aims to be the first person using oxygen therapy to pull a MiG-15 and an F-104 Starfighter down a runway by herself. Oh, and your basic MiG-15 weighs 3.5 tons, a Starfighter seven tons.
Skalvoll’s goal, she says, is to show “that life with serious lung disease can be a good life.”
Launched early this year, Vita helps position CSL Behring as a leader in the treatment of rare diseases, a central business focus for the Pennsylvania-based company, says Anthony Farina, chief communications officer and vice president of corporate affairs.
Vita enables CSL Behring to reach and engage with an often isolated audience, as well as patient advocacy groups, employees, financial analysts, reporters and health care experts.
“Many times, rare disease patients don’t know another person stricken with that disease,” Farina says. “So, they become very lonely. It can be kind of scary. That’s why those communities for those with rare diseases are so important. And that’s why we work with them to tell those stories and to provide insight that folks need.”
Starting with an online search
In the United States, a rare disease is defined as affecting fewer than 200,000 people. The numbers, however, can be as small as a few hundred. When patients are diagnosed, Farina says, they usually start by searching online. They find the company waiting with information.
CSL Behring seeks to offer stories and videos “from us, and not always about us,” Farina says. Patients and others begin looking to the company for expertise, frequenting its sites and subscribing to its newsletter.
“It reinforces our leadership,” Farina says.
Vita was produced after the company completed a brand positioning effort in conjunction with Ogilvy several years ago. CSL Behring then established the brand journalism site, with the help of training and strategic counsel from Ragan Consulting Group. CSL Behring sought a news “ecosystem” in which its writers would work with and pitch stories to their editors, as at a newspaper, Farina says.
To support communications including Vita, the company has beefed up staff. Over the last four years, the company has doubled its communications staff to about 40 people worldwide.
In the eight months since the launch of Vita and a new corporate website, the number of visitors has doubled, says CSL Behring’s Greg Healy, head of global content generation. Time spent on Vita stories is much greater than on other content elsewhere on company websites. Traffic to the main website, CSLbehring.com, has doubled since the launch of the design and content strategy.
“The company has doubled its Twitter followers since enhancing our online presence and amplifying our global brand with Vita,” Healy says.
A double-digit success
Subscriptions to the Vita newsletter have seen a double-digit rise, drawing readers from the United States, United Kingdom, Australia, Switzerland, Germany, India and other countries.
“We are influencing the influencers,” Healy says.
The company amplifies content through its external and internal channels, among them Twitter and LinkedIn, an employee magazine and a global podcast.
“Emotionally compelling and informative storytelling will win the day,” Farina concludes.
Vita offers an article about a freshman with a rare immune deficiency. For students with rare diseases, heading off to college is a major step, as they and their parents worry about being away from home—and from doctors familiar with their condition.
An animated video titled, “What is Hemophilia?”—which helps explain the disorder to children—has garnered 50,000 views. Another video offers advice for the undiagnosed.
An article series, “Heroes Who Work Here,” features employees such as a cyber security expert. The company has been known to newsjack, as with a recent hurricane. “Hurricane Prep for Rare Disease Patients” quotes sources who survived past emergencies, among them a Houston resident named Woody Hutsell.
“He says he made it through the disaster due to ‘good planning, good luck, good attitude and good friends who helped us when we needed it,’” the article states.
Guidance from advocates
As CSL Behring planned the site, it sought the advice of patient advocacy groups to find out what information they were looking for.
“We think we know,” Farina says, “but when you engage with your stakeholders, it’s really important to listen and be able to adjust to their needs. It’s not exactly always what you want to do.”
Farina also advises organizations to seek input internally as they plan their brand journalism initiative.
He explains, “When you’re ready to do this, really engage with the people on the team, so that they see where we’re going, how we’re going to contribute, and how we’re going to make a difference.”
The result, he says, has been a success.
“It’s just been wonderful, very fulfilling to see,” Farina says. “We have built a great deal of credibility among senior leaders. I have the best job in the world. All I have to do is encourage the team, stay out of the way, and remove any obstacles that are in the way.”