Patient Advocacy

The Orphan Drug Conference USA 2017 welcomed thousands of attendees as science, industry, big pharma, and patient advocacy groups met in Washington, D.C.

30 million people in the United States are living with rare diseases…many of them children…and they can go undiagnosed for years.   Advances in human genome mapping is helping families get treatment faster, and Global Genes is an organization that connects families who are trying to cope. Join President and Founder Nicole Boice and Patient […]

Joining The Balancing Act is Nicole Boice, founder of the Global Genes Project, a rare and genetic disease patient advocacy group, here to talk about how millions of Americans—one in ten—fall through the cracks of medical treatment because there is so little awareness or research funding the treatment of their conditions. There are seven thousand […]