Sunday, November 19, 2017

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

January 31, 2011 by  
Filed under Featured Stories

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 to have such great people trying to help educate the world on rare diseases that affect millions of people worldwide.  The majority of the 7,000 different rare diseases we know of are genetic in origin — that’s why the Global Genes Project is using jeans and denim as their awareness theme!

My entire family and a bunch of friends will be involved in the “Wear That You Care” denim campaign and will wear jeans and jean ribbons on Rare Disease Day on February 28, 2011. I have been asked to speak on Rare Disease Day at Pfizer’s event in Boston and you’ll find me in my jeans and wearing my denim blue ribbon!

Please show your support by displaying this Global Genes logo for Rare Disease Day on your website and raise awareness for all people with rare diseases.


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

January 9, 2011 by  
Filed under Featured Stories

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 posted.

In association with the Global Genes Project, the NIH Office of Rare Diseases Research is encouraging all attendees to wear their favorite pair of jeans to the event to support the Global Genes Project awareness campaign.  The Global Genes Project awareness campaign is designed around a denim blue jeans theme and a blue denim ribbon which has become the unifying symbol of hope for the rare disease community worldwide.  Check out our kid volunteers who make ribbons!

Denim blue ribbons will be distributed at the event and the Global Genes Project will be bringing some of the 7000 Bracelets of Hope which have also been made by volunteers around the world to represent the 7000 rare diseases that afflict an estimated 250 million people globally.

Supporters from the NIH Clinical Center, the NIH Institutes and Centers, the Health Resources and Services Administration (HRSA), the Food & Drug Administration’s Office of Orphan Product Development (OOPD), the National Organization for Rare Disorders (NORD), and the Genetic Alliance will also be at the event.

Attendance is free and open to the public. Unfortunately, I will not be able to attend as Pfizer is holding a Rare Disease Day 2011 event the same day and I have been invited to speak along with other rare disease advocates.


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