Global Genes

During The Balancing Act's Rare Disease special, we explore two rare diseases: X-linked hypophosphatemia and neuroendocrine tumors.

Ilana Jacqueline joins Olga Villaverde as we learn more about her courageous battle with a chronic disease.

On this episode, we shine the spotlight on rare diseases such as Hunter’s Syndrome and ATTR. Plus we attend the Global Genes Summit & Gala to celebrate those most affected. Dr. John Berk, Associate Professor of Medicine at Boston University and Clinical Director of its Amyloidosis Center, joins us to discuss the medical condition called […]

Each year, Global Genes hosts its annual RARE Tribute to Champions of Hope Gala, where we have the good fortune of hearing from rare disease champions from around the globe who are proving that great things can be accomplished by dreaming, planning, taking action, and believing. The results are quite inspiring.  The purpose of the RARE Tribute […]

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 […]