A blog exploring pharmaceutical relationship marketing, emarketing and innovation with a focus on rare disorders.
The convergence of rare disease, digital communications, and pharmaceutical marketing communications

Why Search Matters More for Rare Disorders

Posted by | 4:08pm on Wednesday, March 25, 2009

Spelling diabetes is one thing. Spelling immune thrombocytopenic purpura is something else altogether. 

Pamela Todd, Content Strategist at Siren Interactive, contributes this post:

Search matters — especially when it comes to healthcare.  The PEW Internet Project reports that 75%-80% of Americans have searched for health information online. And significantly, this information-seeking usually begins at a general search engine.

Among the most active searchers are those with a disability or chronic disease, who have a continuing need for information and support — like those with rare disorders. Why is search so important to patients and caregivers in the rare disorder community?

People with rare disorders face hurdles that motivate them to seek information

The FDA notes that people with rare disorders often face challenges that occur less frequently with more common disorders, including delay in getting an accurate diagnosis, few treatment options, and difficulty finding medical experts. All good reasons to go online.

Information on rare disorders may be hard to find

Patient-friendly information on rare disorders is often limited — and hard to locate. Spelling diabetes is one thing. Spelling immune thrombocytopenic purpura is something else altogether. Misspellings, variations on wording, and technical terminology are common problems that can best be addressed with paid search ads and targeted search strategies.

Financing treatment may require additional research

Treatments for rare disorders are often expensive. Insurance can cap out, treatment access can be denied by those unfamiliar with the disorder, and government regulations regarding coverage can change.  Providing audience-specific and searchable information on insurance, Medicare, and Medicaid is one important way of offering service to rare disorder communities.

Finding others to share the journey can be a challenge

Unless they reach out and try to connect, people with rare disorders can go their whole lives without meeting anyone else that shares their experiences. Foundations and support groups like the National Organization for Rare Disorders work hard to connect these people. But another way people find support is through searchable blogs, social networks, and community sites.

Building an effective search program for rare disorder communities means knowing how to speak their language. And that means keyword research, which can also prove valuable in helping you understand your audience’s perceived needs.  It’s just one more reason why search matters more for rare disorders.

(Image courtesy of Danard Vincente via Flickr)

About Pamela Todd

Pam’s extensive work in online intelligence, competitive analysis and audits allows her to provide clients with insights into their audiences’ needs and preferences. She puts those insights to work in creating and implementing user-centric, interactive content strategies to reach targeted patients, caregivers, and healthcare professionals.

View other posts from Pamela

4 Pingbacks/Trackbacks

Siren Interactive
  • Siren Interactive
  • Rare Disease Relationship Marketing Experts
  • 626 West Jackson Blvd, Suite 100
  • Chicago, IL 60661
  • 312.204.6700
  • 866.502.6714 (Toll Free)
  • www.sireninteractive.com