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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

Give thanks for connections

March 26, 2016 Wes Michael

It is nice to have a special day to remind us to give thanks. Otherwise we would go about business as usual, and take wonderful things for granted.

Thanksgiving is a great time to reconnect with friends and family. One of the many things I’d like to give special thanks for this year are those connections.

This weekend I went to a college football game with many classmates from years ago. It was much more about talking and catching up than watching the game, (though our team won and tied for first place in the league!).  A few of these friends I’d kept in touch with over the years. But I’d been out of touch with others for 30+ years. Only through the marvel of social media (LinkedIn in this case) had we been able to reconnect. So as much as I pester my kids to put their phones away and de-Instagram at the dinner table, I have to be thankful these things exist.

Social media has been an even greater boon to many of our patients. As you can imagine, those with rare diseases are often the only one in their area with that disease. Connecting with others at patient conferences and other events gives them the opportunity to meet others and see that they are not alone. And social media offers the opportunity to connect with even more fellow sufferers, and more often.

We meet patients at events (conferences, walks educational forums, etc.) where we can take in the positive experience of their connections. We are fortunate also to be able to take advantage of the patients’ social media connections. Those we meet at these events pass the word on to others who are in their support groups, on their closed Facebook pages, etc. And we are able to recruit them to our panels as well. We like to tell the patients that their word of mouth is better than our word of mouth.

The added benefit of these extended connections and referrals for you is that our panels include not only the more engaged patients/caregivers who attend the events, but also those who don’t or can’t attend, who may be less engaged. The end result is a panel encompassing the wide spectrum of engagement, from all across the country.

Finally, I personally am extremely grateful that through this business I’ve been able to reconnect with many former colleagues from throughout the former market research world!

Filed Under: Business

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