word cloud of content marketing words on Siren Interactive's blog SirenSongContent marketing is currently a hot trend, but in the rare disease space it’s been an essential tactic for years. I like the definition of content marketing as “the art of communicating with your customers and prospects without selling.” In the rare disease niche this is an important concept: educate, then sell.

If a pharmaceutical company can offer value to patients, they will gain trust, develop a relationship over time and ultimately obtain brand loyalty. In the rare disease space the way to add value is with information and tools. Patients and families want accurate and user-friendly information on common symptoms and how to get diagnosed and treated. They need tools that help them cope with the daily tasks of living with the disorder. They want to hear the stories of people like them. Unlike more common diseases, like diabetes, these resources are not available, so rare disease patients and caregivers look to pharma to provide them.

Providing value yields brand loyalty

Providing value yields brand loyalty

 

Why is content so valuable for rare disease patients?
In many cases information is scarce. It’s estimated that only half of rare diseases have an advocacy organization. This leads to a huge gap in education and support.

  1. It takes an average of nine years for a rare disease patient to get accurately diagnosed, according to the National Organization for Rare Disorders. These patients and caregivers spend many hours searching online for answers.
  2. Many rare disease therapies aren’t easy to adhere to and require ongoing support. They may entail infusions administered by a healthcare professional, self-injections or multiple daily treatments.
  3. Physicians may not know much about the disease or the available treatments. The constraints of time and training limit most physicians’ abilities to effectively diagnose and treat rare disorders. This leads to many rare disease patients and caregivers becoming unusually empowered. These patients can and often do play a lead role in educating physicians on various aspects of rare diseases. They look for the latest information about research, clinical trials and treatment options.

For all these reasons, patients welcome pharma’s participation as long as pharma is adding value by providing information, tools and support that can’t be found anywhere else.

Content is definitely king
In order to develop valuable content, your target audience must always be in mind—their needs, their concerns, their challenges. The content should address those relevant issues and utilize the tone and language familiar to that audience.

Just as critical as the message is the delivery. Since rare disease patients are often seeking support along their journey, email can play a key role. In addition, the number of people accessing information on smartphones and tablets continues to rise. Content calendars can effectively manage all patient touchpoints. Valuable content—whether it appears on a website, in an email or on a mobile device—should be optimized for its platform and easy to access for the target audience.

How are you using content marketing to build trusted relationships with patients and families?