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The convergence of rare disease, digital communications, and pharmaceutical marketing communications

Are You a Rare Disease Blogger?

Posted by | 4:31pm on Monday, September 13, 2010
field of sunflowers

I know there are more parents like me out there 

Today I found this amazing blog entitled LittleMissHannah. It’s about Hannah Ostrea, a little girl with Gaucher’s Disease, written by her mother, Carrie.

Carrie says she is, “on a mission to find and compile all blogs and up-to-date websites of children with rare diseases (or adults who were diagnosed as children). There are over 6000 rare diseases affecting children in the world, and I can’t do this by myself. I’ve been looking, and I’ve only found less than a dozen blogs… and I know there are more parents like me out there.”

If you are a rare disease blogger, or know one, please contact Carrie via the site.

Alone we are rare. Together we are strong.
A rare disease is one that affects fewer than 200,000 Americans. It’s estimated that more than 80% of people with rare diseases are children.

Carrie blogs to raise awareness and share her family’s story. She was quoted in a Time magazine article on rare disorders: “Deep down I wish the general public would just recognize what families like ours live through on a daily basis. And how rare disease affects each and everyone one of us down to the core.”

Carrie’s efforts remind me of the power of the web and the importance of sharing stories.

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 Duncan Harris 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.

View other posts from Eileen

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  • http://twitter.com/atienoakumu Atieno Akumu

    Washington University School of Medicine’s Genomics and Pathology Services and the Rare Genomics Institute are planning to award grants for the sequencing of 99 exomes to rare disease advocacy groups. The grants will be free of charge to the rare diseases community! Anyone interested, should contact The Rare Genomics Institute right away. Interested applicants should submit letters of interest by April 2, 2012 at http://www.raregenomics.org/rare99x

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