National Center for Advancing Translational Sciences (NCATS) Announced By National Institutes of Health (NIH) Director Francis Collins

The Global Genes Project, a rare disease patient advocacy organization, was invited to present a giant handmade denim genes ribbon to Dr. Francis Collins on February 28 — Rare Disease Day 2011. This year the NIH Office of Rare Disease Research (ORDR) encouraged everyone to wear jeans to show support for the campaign of using […]

Dr. Stephen Groft of NIH Visits Global Genes Project In Advance of Rare Disease Day 2011

Monday, Feb. 28, is Rare Disease Day 2011.  Here is a great story from the Orange County Register, which is helping to raise awareness for rare diseases and our efforts to spread awareness through our blue denim jeans ribbon and “Wear That You Care” campaign. Local advocates looking to kick-start research to help patients with […]

Global Genes Project Logos To Support Rare Disease Day 2011 Now Available

When I opened my in-box today,  I received  the Global Genes logos to support Rare Disease Day 2011 from the Global Genes Project.  The logos are so cool — the work is being done by an amazing strategic communications consultancy and reputation management firm called Charleston | Orwig. The rare disease community is incredibly lucky […]

National Institutes Of Health to Host Rare Disease Day Event; Dr. Francis Collins To Speak; Wear Jeans!

The National Institutes of Health (NIH) will celebrate the 4rd Rare Disease Day on February 28, 2011, with a day-long celebration and recognition of the various rare diseases research activities.  The event will be held in the Lipsett Amphitheater from 8:30am to 5:15pm. Dr. Francis Collins is expected to speak. A tentative agenda has been […]