Healthy exposure for rare diseases

A combination of news and human interest can help draw the media's attention.

A combination of news and human interest can help draw the media's attention.

The National Organization for Rare Disorders defines a rare disease as one that afflicts fewer than 200,000. While such diseases are serious, the small number of people affected makes obtaining media coverage a challenge. To combat this, you must take advantage of news opportunities, such as important scientific or technological breakthroughs and FDA approvals.

"The best way to get the word out is to have news," says Lenna Scott, communications director for Families of Spinal Muscular Atrophy (SMA), who used a recent scientific breakthrough to raise awareness for the degenerative neuromuscular disease that kills 50% of diagnosed children before their second birthday. "Though it's a narrow disease, when something concrete [will] help people, reporters tend to be more open."

To drive coverage of Hunter Syndrome, an enzyme deficiency in young boys that results in a progressive inability to process waste, Colleen Beauregard, healthcare practice VP at Waggener Edstrom Worldwide, leveraged FDA approval of a Shire treatment for the disease, which afflicts only about 500 in the US (and 2,000 worldwide).

"[FDA approval] is a milestone," she says. "There's a small news window. Be ready. We had b-roll and a list of key regulatory watchers in our back pocket."

Marita Gomez, VP at Cushman/Amberg HealthInfo Direct, has worked on many rare diseases, including hemophilia. "Before approaching media, know signs, symptoms, and treatments," she says. "[Know the] economic impact of [the] disease. Collect data."

Data is key, but media often prefer human interest. "Some outlets want [a disease] to affect a broad number of people, but a compelling human story can be very viable for any outlet," says Patty Gregory, PR manager for Children's Healthcare of Atlanta (CHA).

"We tried to pitch heart disease with the statistic that it affects 1 in 100 children,"
she continues. "People care more about the human story. We tailored it around a patient, physician, or new treatment. The statistic is a sidebar. The story is about the people or the technology."

Scott landed nice coverage about the sibling of an SMA patient who asked to hang 1,000 paper cranes at a conference after he learned a Japanese legend holds that miracles occur in the presence of 1,000 cranes.

"It's not about the disease, but it's a great story," Scott says.

Visual stories are always enticing. A prosthetics lab at CHA has proved fruitful for Gregory. "Media [can] follow patients [and] be part of the entire experience," she says.

She has also had success by focusing on healthcare workers who have recovered from a disease and now work with children who have the same disease.

"Stories about obstacles and solutions can increase awareness," notes Gomez. "For example, there are a lot of obstacles in trying to integrate a hemophilia student in school."

A local approach has fueled steady coverage of Hunter Syndrome and Shire's treatment. "When a clinic signs on to administer the drug, we interview them, the physician, and do local outreach," Beauregard says. "Have third parties - including advocacy groups and physicians - ready to speak."

Gregory advises looking outside your organization for information to provide the press, including other sources, recent journal and news articles, and physician bios.

"Whenever we talk to a physician or nurse, we ask for colleagues who work on [the disease] - people who can give us broader appeal when pitching a story," she says.

Gomez says pharma-company medical advisory board members can be good spokespeople. "Some PR agencies recommend celebrities," she adds. "The celebrity need[s] to have a tie with the disease."

Always invite media to attend conferences. "It's enlightening and extremely emotional," Gomez says. "You come away feeling you want to help and educate others."

Scott adds, "Don't limit yourself by thinking only about one piece of an event. It may not be a story today, but it can lead to other things. I encouraged a family to send a thank-you note [to a] reporter. This reporter got connected [and] became an advocate in the newsroom."

Technique tips


Seize scientific, technological, and regulatory news windows

Humanize stories, leverage third parties

Provide media with visual stories, access, and resources


Pitch routine events without presenting a unique angle

Forget to invite reporters to conferences

Use celebrity spokespeople without a tie to the disease

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