Last summer, my sister Becky approached me with an idea.
She wanted my help building a platform at CNBC to spotlight the 30 million Americans living with a rare disease.
Becky hoped that doing so would help give a voice to the millions of people that are often overlooked by the medical community … who suffer from diseases that most of us have never heard of.
Her vision was to create a space for that community — a space that connects people with the incredible work already being done by rare disease advocacy groups, and builds on it by also reaching CNBC’s unique audience — an audience with the power and influence to help bring about change for rare disease patients and their families.
I was intimidated by the challenge. Not just because of the amount of work that I knew would be required to meet our launch deadline, but also because of the level of empathy, and sense of responsibility that I knew would be required to do it well. I wasn’t sure if I would be up to the task.
