Financial News Channel Launches CNBC Cures to Raise Rare Disease Awareness

Rare Daily Staff

The financial news cable channel CNBC announced the launch of CNBC Cures, an effort to raise awareness about rare diseases and improve outcomes for people living with these conditions.

CNBC Squawk Box anchor Becky Quick leads the initiative, which was inspired by her family’s rare disease journey. Her youngest daughter, Kaylie, was diagnosed with SYNGAP1-related disorder, a rare genetic neurodevelopmental disorder caused by mutations in the SYNGAP1 gene that reduce levels of the SYNGAP1 protein, a key regulator in neuronal communication.

In announcing the initiative, Quick said she was struck by how many other families are facing similar struggles. CNBC noted that investors and pharmaceutical companies often overlook these conditions, and the medical community underserves people affected by them.

CNBC Cures is partnering with leading researchers, doctors, regulators, and patient advocates. Its advisory board includes Amy Abernethy, co-founder, Highlander Health; Madeline Bell, CEO of Children’s Hospital of Philadelphia; Wendy Chung, chief of the Department of Pediatrics at Boston Children’s Hospital; Stanley Crooke, chairman and CEO of the n-Lorem Foundation; Alex Gorsky, former chairman and CEO of Johnson & Johnson; Scott Gottlieb, former commissioner of the FDA; Anna Greka, professor at Harvard Medical School and Mass General Brigham; Akshay Jain, chairman and CEO of the Jain Foundation; Sunitha Malepati, founder and CEO of the Buffalo Initiative; Amy McCooe, executive director of The Wolverine Foundation; Matthew State, child psychiatrist and human geneticist at UCSF; and Becky Quick, CNBC anchor.

The initiative aims to build a community that breaks down barriers limiting treatment options and isolating those living with a rare disease. CNBC said it will highlight innovative scientific developments in the rare disease space and the bottlenecks preventing them from reaching patients.

It is launching a new weekly newsletter with insights on the biggest headlines affecting the rare disease community; expanding on-air and digital coverage; and will host the first CNBC Cures Summit, taking place March 3 in New York to bring together investors, policymakers, and leaders in biotechnology.

“We thought CNBC has a pretty unique audience,” Quick said. “It’s got an influential audience. It’s an audience of people who know how to get things done. Why not tap into what they can bring to the table too?”