Rare Disease Day Logo and Ribbons – Patient Advocates Join The RARE Team!

Here are the Rare Disease Day logos for 2012 from the Global Genes Project, the leading rare disease advocacy organization for the rare disease community. Since Rare Disease Day 2012 falls at the end of February each year, the date for 2012 is Feb. 29 (leap year). Wear jeans or demin on Rare Disease Day […]

Is Your Disease on the RARE List™ – If So, More Bad News!

I wonder if people truly understand what it means if their rare disease or disorder is on the RARE List™? Last week, the Global Genes Project, leading patient advocacy organizations representing the rare disease community, issued the RARE List™, a stunning 65 page alphabetical listing of roughly 7,000 known rare diseases and disorders. Did you […]

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 […]

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