Using LinkedIn to Change the Lives of Patients Affected by Rare Diseases

February 12, 2013

I was on the 21st floor of the Hilton Hotel in San Francisco, looking out over an expansive view of the city, musing on how my life had changed from one of a scared and uninformed mom of a very sick child, to one of a rare disease advocate giving voice to a national audience.

Last month, I had the opportunity to attend LinkedIn’s Global Sales Kickoff to speak with 2,000 of their employees about how LinkedIn changed my life and the lives of 1 in 10 American patients who are affected by rare diseases.

Carri Levy at Global Sales Kickoff

I knew LinkedIn was an important tool, but up until a couple of months ago—I wasn’t sure how to utilize it effectively. Like many LinkedIn members, I wasn’t looking for a job or looking for someone to work for me—I was looking to break through a barrier in communication that I so often come across in my line of work.

I’m a television producer for The Balancing Act, a morning talk show on Lifetime Television. As a producer, my job requires me to create story lines, sell them to my executive board and work with the heads of major corporations to develop a segment suitable to our audience.  It’s a time-intensive process as the deadlines of a daily show require quick decision making skills by all parties involved.

Last year, my daughter Ilana had spent more time in the hospital than out. There were no answers to what was wrong with her, just multiple symptoms that had become increasingly debilitating. This wasn’t new for us, but the intervals between sickness and health had gone from short to nearly nonexistent. Since no doctor had any answers, I like most parents in the rare disease world, had taken on the responsibility of researching her medical issues and tracking down specialists.

My exhaustive search led me to a community of patients and parents just like us. I realized that I had the tools and audience to help facilitate a voice for the rare world.

Fast forward a few months and The Balancing Act had green lighted my idea for a series called Behind the Mystery: Rare and Genetic Diseases. I had a very serious segment that was up for consideration. The topic was a disease called Myelofibrosis and I knew of a company that was working on FDA approvals and would be the perfect fit; however I could not connect with the Vice President of Marketing.

Every time I called the company, it seemed like someone was putting up a wall between me and the person I really needed to talk to. Finally, in my frustration I searched for the drug on LinkedIn and lo and behold, to my amazement the VP of Marketing’s profile popped up.


I pulled out my credit card and signed up for LinkedIn’s executive membership and inMailed him directly.

His response was immediate, he loved what I was doing, and he was in.

This exact situation repeated itself over the course of the show’s production as I’ve found dozens of expert guests through LinkedIn. As a mom of a child with a rare disease, you live with endless question . You can find almost anyone on LinkedIn. A great question to ask when you get connected with someone on LinkedIn is: What can I do to help you?

For more on my journey, check out my blog at:

Editor’s Note: If LinkedIn has helped you transform your career or business, please share your story with us or write a post on LinkedIn with the hashtag #MyLinkedInStory. For more inspiration, check out more success stories.