Written by Shawna Polivka

A common misbelief among marketers is that a particular disease is too rare to have a social presence online. They fear that because the prevalence of the disease is so low, it would be a waste of money to spend time in social. Surprisingly though, we’ve found that discussions of rare diseases on the social web can be more abundant than even the most common of diseases when put into context of the diagnosed population.

According to the National Institutes of Health (NIH), a rare disease in the United States is one that affects fewer than 200,000 people. A target market that’s less than 200,000 people is small by marketing standards, but in aggregate, over 30 million people are diagnosed with one or more of the 7,000 identified rare diseases.

Prevalence of rare disease mentions on social

Imagine that you’ve been diagnosed with a rare disease. You leave the physician’s office and go home to begin your life managing your condition. Who do you turn to for help beyond the physician’s office when no one else around you has even heard of the disease you have? For many, the social web provides the only opportunity to make connections with people who are experiencing the same things as them.

“I appreciate all that share their stories because personally I need to know there are people out there that understand and that know others understand them. Thanks to all!”
– Community member of the Narcolepsy Support Group on DailyStrength.com

The pictures below provide a reference for how much greater the volume of conversation is per person diagnosed with a rare disease than the volume of a more common disease.

To compare, a more prevalent disease such as Diabetes receives about one mention for every 12.8 people diagnosed with the disease in the United States.

Wealth of knowledge from rare diseases on social

Social media conversations have allowed an otherwise small population of people to gather around a topic and create a conversation that serves as a wealth of information to us marketers. By monitoring conversations, we can learn more about the true patient experience of living with these rare diseases including:

Symptoms
Treatment
Struggles
Language specific to the disease

Popular forums for diseases include Daily Strength and PatientsLikeMe. Most recently, hospitals and institutions have been using social channels to find research participants. They host forums where people can talk about a specific disease to learn about it.

In closing, using social media as a source of market research or as a channel to communicate to people living with rare diseases might not seem like an efficient use of resources, but in reality, these people have already created popular destinations filled with insightful discussions about their daily trials and tribulations. We have the opportunity to tap into these conversations to inform a meaningful communications strategy.