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Many Rare Disease Patients Unsure of Treatments

Posted by | 6:54pm on Tuesday, March 2, 2010

37% of respondents are not sure if there are FDA-approved treatments for their rare conditions. 

The National Organization for Rare Disorders (NORD) and Inspire recently surveyed members of their online rare disease community. The data is fascinating, but this jumped out for me: 37% of respondents are not sure if there are FDA-approved treatments for their rare conditions.

This shows the need for pharmaceutical companies to increase awareness of their drugs and provide more education to this target audience. The people surveyed are members of an online community, so they use the Internet. This highlights the opportunity for pharma to use the online space to reach relevant patients and provide treatment information.

The survey provides support for Siren’s insight that rare disorder patients are the primary drivers of diagnosis and treatment: 41% of respondents report that their doctors are not knowledgeable or barely knowledgeable about their disorder.

Online communities improve health
The data also reinforces the idea that online communities can play an important role in the health of people with rare diseases; 58% of respondents say that participation in the rare disease online community has improved their health.

From experience, we know that patients with rare disorders feel alone and isolated; they seek a connection with others like them. It makes sense that finding a supportive community would make a difference in their health.

The survey was taken by 554 members of the online community: 68% are patients and 32% are caregivers while 81% are female and 19% are male. Read the full results at Inspire.

Empowing ePatients
If you are interested in this topic, you may want to attend Engagement for Niche Brands — A New Paradigm for Empowering ePatients at the CBI eMarketing event. The workshop will be led by Dave deBronkart “e-Patient Dave”, Cynthia North, Consumer Marketing Director of Bayer Healthcare Pharmaceuticals and Heather Reilly Powell, Director, Compliance Training and Reporting of Daiichi Sankyo and Wendy White, President & Founder of Siren Interactive.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive. You can connect with her on Twitter at @eileenobrien.

(Image courtesy of ciadefoto on Flickr)

About Eileen O'Brien

Eileen has more than 16 years of digital healthcare marketing experience. She is an opinion leader on social media and biopharma, and has been invited to speak at industry conferences and quoted in publications.

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