How CNBC Cures is bringing rare disease stories to a national audience

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.

Thankfully, Becky and I weren’t alone.

Dozens of our colleagues rallied behind CNBC Cures. They dedicated their time and talents working on something that has inspired everyone connected to it.

And because of their efforts, CNBC Cures has seen some early success.

There have been well over a dozen stories on our air highlighting the rare disease community since we launched on January 8.

Over 20,000 subscribers have signed up for the CNBC Cures Newsletter, making it one of the fastest growing newsletters the network has ever launched.

We’ve had thousands of listeners stream episodes of The Path with Becky Quick, the Cures podcast series we launched where Becky shares personal and emotional stories of people living with rare diseases.

We’re getting some traction on social media too, with Cures videos combining for 1 million views on Facebook, TikTok, Instagram and LinkedIn.

Our first annual CNBC Cures Summit, a live event that saw Warren Buffett shaking hands with Boomer Esiason and Regeneron CEO Leonard Schleifer, sold out not long after registration opened up. And the free livestream of the event had more than 8,000 views.

On Thursday, we aired our one-hour documentary, “CNBC Cures: Defying Rare Disease.” The special let Becky step out from behind the anchor desk to share her family’s private battle with rare disease, and open up about her daughter Kaylie’s SYNGAP-1 diagnosis. Through her story and others like it, Becky revealed the stark reality of patients caught between groundbreaking scientific advances and the persistent gaps in funding, access, and support.

In the two months since we’ve launched Cures, we’ve more consistently talked about the issues impacting the rare disease community than we have in the two years prior.

It hasn’t felt forced, and it hasn’t been rushed. Because people care about the message.

That speaks to the importance and the relevance of these stories.

What I’ve learned through this process is that nearly everyone knows someone that’s impacted by a rare disease. And the issues we’re discussing — from regulatory reform, to scientific innovation, and access to medicines — don’t just matter to the rare disease community … they’re issues that matter to all of us. 

They’re the issues that will remain the driving force behind CNBC Cures, and the issues we’ll use to frame the stories we bring you from this incredible community.

But most importantly, over the last two months, we’ve heard a lot from from you, our viewers and readers. We’ve received hundreds of emails … more than we’ve been able to respond to — though we’re trying.

You’ve shared your stories with us, and brought us into your lives. You’ve made us smarter, and more relevant, and you’ve affirmed that we’re on the right path.

It’s all the justification we need to know that this is an area that’s worth investing in as a network.

Thank you for your continued support, and for your inspiration.

And keep following CNBC Cures, because we’re just getting started.

For more on CNBC Cures, check out CNBC.com/cures. To sign up for the newsletter, click here. To check out the latest episode of “The Path with Becky Quick,” click here.