Author: Carri Levy-Creator of Behind the Mystery: Rare & Genetic
A TV producer for orphan diseases
Date:22 January 2016 What makes a great TV producer for orphan diseases?
Passion...
Today I am doing some research on cannabis oil and cancer treatment. Why? Because I have a request from a person with a rare cancer to learn more about it. Their goal is to get me to do a piece on our show Behind the Mystery, so the doctors that are treating him can have something to look at that will have a top KOL explain it.
Passion...
This month we filmed a segment on Chronic Kidney Disease, which encompasses a myriad of rare diseases. What caught my attention for this story? The failure of the AV fistula for access for dialysis. My step mom had three painful failures before she had a port inserted.
Passion...
Why did I do a segment on Von Willebrand's last year? My daughters husbands cousin has it. She couldn't afford the treatment everyday, so I searched out companies to do more education on the disease and also to learn about the ways in which companies help patients get these important drugs. Now that I am hooked up with group on Facebook, and see how they are starving for more education , I'm back on the prowl.
Passion...
Obviously the main reason that I love this community is that I know what it is like to be personally affected . My daughter spent most of her life undiagnosed and because I am tenacious, like most rare disease moms, I finally got a diagnosis.
Passion...
What's my goal now? To help those patients floating around from doctor to doctor. To help those biotechs find the patients that are undiagnosed get diagnosed to support clinical trials and to get people the treatments that they so desperately need. I want to help patients find their community to help support them through their journey and find those treatments that are already available.
Passion...
That is why I am a great TV Producer for Rare & Genetic Diseases.