It’s Rare Disease Day!

Posted by admin on Feb 29, 2012 in Videos, What's New | 0 comments What is a Rare Disease? In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease. As you might know,...
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Mark Your Calendars!

Posted by admin on Feb 19, 2012 in What's New | 0 comments This year’s race is scheduled for Sunday, October 21, 2012 in Dimondale, Michigan! We had tremendous success last year, bringing in more than 300 registrants and hundreds more spectators and volunteers! Aubrey’s Butterfly 5K  was able to raise over $10,000 for Debra of America, the organization that provides funding for Epidermolysis Bullosa (EB) research and family support...
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Dimondale is ready for inaugural Aubrey’s Butterfly 5k

Posted by admin on Oct 19, 2011 in What's New | 1 comment Organizers and community partnering to find cure for rare genetic disease October 19, 2011 DIMONDALE, Mich. — With the inaugural Aubrey’s Butterfly 5K Walk/Run on Oct. 22, race organizers and the village of Dimondale are ready to find a cure for Epidermolysis Bullosa (EB). The run is being held in memory of Aubrey Joy Oberlin and to raise money for research for EB. Children born with EB are...
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Happy 1st Birthday, Aubrey Joy!

Posted by admin on Oct 6, 2011 in Videos, What's New | 14 comments Aubrey Joy Oberlin was born on this day last year, October 6. A heartfelt day for her family and everyone that loved her or knew of her. A day to remember her short time here, but also a day to sit back and reflect on how much good that came out of her life and the huge impact her story continues to make every day. Were you impacted in some way? Let’s celebrate her birthday today by...
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Are YOU the one?

Posted by admin on Aug 10, 2011 in Videos, What's New | 0 comments What if YOU were the one that led to the cure for Epidermolysis Bullosa, just by spreading awareness? Join us!
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