NIH Supports Global Genes Project and Jeans/Genes Awareness Efforts


Over the past two years, the Global Genes Project efforts have been highly visible at the NIH for the annual World Rare Disease Day events.  In 2012, we presented Dr. Francis Collins and Dr. Steve Groft with a Rare Pictures of Hope™ photo book made […]

PARENT DRIVEN RESEARCH – Innovations from the trenches!

A Push to spur more drugs for deadly rare diseases LAURAN NEERGAARD, AP Medical Writer Cassidy Hempel, 6, waves at hospital staff with the help of her mother Chris at the Children’s Hospital and Research Center in Oakland, Calif., Friday, March 18, 2011. Cassidy and […]

Wear That You Care Campaign Success at World Rare Disease Day 2011


It’s a Wrap – Rare Disease Day 2011. DANA POINT, Calif. – The 4th Annual World Rare Disease Day took place February 28, 2011 with a fanfare of activities worldwide! Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased […]

Global Genes Project and 46NYC Launch ‘Treat46le’ T-Shirt For Rare Disease Awareness


Treat46le T-shirt Honors Millions of Rare Disease Patients Living Without Hope 46NYC ( is helping raise awareness for an important cause – this time the drug development crisis facing the rare disease patient community worldwide. The New York-based clothing company has teamed up with the […]

World Rare Disease Day for the Joshi Family – A Family Story


I always feel mixed emotions in my community when World Rare Disease Day rolls around each year.  I feel empowered because I have been part of The Global Genes Project for over a year and I know I have many tools at my disposal for […]