Carri Levy

Carri Levy is the producer behind Lifetime TV’s “The Balancing Act” and “Behind the Mystery: Rare and Genetic”

Like most people in the rare disease community, I found myself searching for an answer to some puzzling symptoms that my daughter was having. She had been sick most of her life. Years of testing, doctors’ visits, hospital stays, nasty experiences, and some very scary close-calls, brought me to the place of desperation. I needed an answer, no matter what.

By the time she reached adulthood, I had been working for several years on Lifetime TV’s daily morning talk show, “The Balancing Act.” It was my job to find guests for the show for educational segments. Stretching myself thin between research for my daughter and research for the show finally inspired me to just combine the two.This is how Behind the Mystery; Rare & Genetic was created. Out of the selfish need to find an answer to my daughters symptoms.

The show has been a great success and because of my involvement in it, I’ve been invited behind the scenes to the rare community. Today I am actively involved in the rare disease community as a patient advocate. My job brings me the opportunity to learn about rare disease heroes, advocates, leaders, and scammers.

My job is to filter through all of the jargon and find the best stories to bring to our national audience–and to find a way to translate the complex medical world and deliver it to patients and parents in need of answers–just like me.

What I find is the most interesting aspect of my job, interviewing new companies, scientists and CEOS, is the motivation of the people behind the scenes that you have no idea about. People that work every day to make sure that your doctor knows about these diseases, and the treatments that are in clinical trials and are also widely, immediately available. These are the stories that I want to tell to you.

My series will be profiling the people behind the scenes in the day to day trenches of the rare disease community. Scientist, product managers, marketing directors, and executive directors. People that have a passion to help every day. You would be surprised how many wonderful people are working to help us .

Connect with Carri on LinkedIn or Twitter.

5 Rare Diseases You Didn’t Know About This Morning
By Carri Levy of Behind the Mystery: Rare and Genetic It bothers me that there are over 7000 rare diseases. I wish I could educate you on… Continue Reading
Woman holding four-leaf clover, close-up
Why Is Your Rare Disease So Hard to Diagnose? Meet The Lucky and the Unlucky
If you have a diagnoses for a rare disease, you are unluckily lucky. Obviously lucky, to have a name of the disease that you have. Hopefully… Continue Reading
Have You Met? |Brian Andersen, Group VP and General Manager at Horizon Pharma
This month I have the pleasure to highlight Brian Andersen, Group Vice President and General Manager at the Orphan Business Unit at Horizon… Continue Reading
Have You Met…? | Molly Mager from Behind the Mystery: Rare and Genetic
by Carri Levy Producing a daily talk show is a monstrous job. Especially when you are navigating the world of rare diseases. When my… Continue Reading
Screen Shot 2014-10-02 at 2.47.28 PM
Have You Met…| Carri Levy
Carri Levy is the producer behind Lifetime TV’s “The Balancing Act” and “Behind the Mystery: Rare and Genetic” Like most people in… Continue Reading

Follow us on Twitter