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Social Media and Rare Disease Day

Posted by | 3:13pm on Tuesday, March 3, 2009

Pew Internet & American Life Project has released several interesting reports so far this year:

Twitter and status updating

“As of December 2008, 11% of online American adults said they used a service like Twitter or another service that allowed them to share updates about themselves or to see the updates of others.”

Generations Online in 2009

“Over half of the adult internet population is between 18 and 44 years old.  But larger percentages of older generations are online now than in the past, and they are doing more activities online, according to surveys taken from 2006-2008.”

Susannah Fox, who was involved with both of these reports, also describes that e-patients are more likely than others to Twitter and otherwise update their status online.

I posted a few weeks ago about the facebook initiative that launched for the National Organization for Rare Disorders (NORD)To raise awareness of rare diseases and the need for safe, effective treatments, people around the world joined together to observe the 2nd Annual Rare Disease Day last Saturday. Typically, rare-disorder patients form their own small advocacy group but find it difficult to be heard.  These patient communities may be the primary source of information about the disease and treatment options.  Many of these patients have never met anyone else in person who has the same disorder, so finding ways to connect and share experiences and support is especially powerful.  Here are examples of some of the efforts:

Bill Sadick lead an effort to make #Rare a trending topic.

YouTube – There are 38 videos posted, 783 views as of Saturday.

Facebook – There were 15 causes already out there wanting to link with NORD when we started the US facebook page several weeks ago.  The Europe facebook page has been going for quite a bit longer and is really picking up traction.

Flickr – Check out the many photos.

This is a fantastic example of social media at work for the common good.  People with rare disorders are obviously hungry to connect with each other to get support, share stories and find out information.  This is where they live.  This is who they trust. For anyone who wants to know what is going on in a particular patient community, they need to go where the patients are. And for NORD, this is a great opportunity to help connect people across patient communities so that they can help each other identify and solve the common problems all people with rare disorders may face.

Is the use of social media different for people with rare disorders than for people with more common chronic diseases?  Does the lack of other avenues for information push these people farther or faster than other people?  I would love to hear your thoughts on this below.

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(Image courtesy of tobiaseigen via Flickr)

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

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  • Sarah Smyth

    Yes, I think those with ‘rare’ diseases have much more reason to use social media.
    Rare diseases are by definition rare, so the sense of otherness is increased. It is often only by finding others who are experiencing what you are dealing with day to day that you can some to terms with the stigma associated with your diagnosis.
    I have a condition called MRKH which affects development of the female genital tract. I have been born without my womb. I discovered this when I was 20. A year or so later I searched the internet and found a list-serve for women with this condition. I have been a member for more than 10 years.
    Interestingly our group recently migrated to google groups and lost many of the members which is quite tragic. Although I have not read the messages everyday at times I have very much needed these women.

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  • http://www.sireninteractive.com Wendy

    Thanks so much for your comment Sarah,

    One of the things I am really interested in is how these groups can be pulled together since they offer such a benefit to patients and the communities at large. Your comment about losing many members when you migrated to google groups makes me wonder if there is something about the way google groups work that is not as easy as what you were using before.

    I have a daughter who was born with no kneecaps and various other associated genetic differences. I actually did the research online initially to help diagnose her. And I have certainly reached out the Nail Patella online group for support and information myself.

    As a marketer, I am really interested in how we can help make all of this work better online. I think everyone has an appropriate role to play, patients, caregivers, doctors, nurses, associations and even pharma.

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