Using social media to trace victims of a rare disease

On March 15, a fifteen year-old girl died recently in the U.S. of a sudden, degenerative disease that may or may not be linked to a Gardasil vaccination. Her parents happen to be professors in the field of medical science. They are trying to clarify the ‘may of may not be linked’ part of the tragedy by finding other people who went through similar ordeals. So far, they have found at least two.

So, if you happen to know about a teenager who rapidly lost the use of his/her motor functions without a solid medical explanation…

Read Dan Gardner’s introduction of the case, call for action and tragic update.

See the video below.

Click the website.

How do you expand the reach of this little campaign? Given the current state of the social media sphere and the rather dispersed character of the target audience, I can only think about a massively multi-platform approach: make sure it’s in all the bookmark sharing systems with the right tags, get on the relevant Facebook and LinkedIn groups, etc, etc, etc.

And use the on-line campaign to attract the traditional mass media, branding it as an ‘Internet phenomenon’ trying to succeed where the public health bureaucracy seems to be failing. That is one case when the ability of television to reach massive, vaguely-defined audiences can still be useful. Some good old-fashioned PR opportunities there.


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