Monthly Archives: January 2013

World Rare Disease Day – February 28, 2013


The Association for the Bladder Exstrophy Community (ABC) for the first time has become a partner for World Rare Disease Day in the USA.


For more information click on the fliers below are go to

Rare Disease Day        RDD_partner (1)        Rare Diseae Day 2013 - Frequently Asked Questions

Bladder Exstrophy is one of about 7,000 rare diseases listed by NORD (National Organization for Rare Disorders)

World Rare Disease Day – 2012 Official Video

For Rare Disease Day Events in your area please click here

If you live near Pittsburgh, Pennsylvania:

Thomas Exler, President of the Association for the Bladder Exstrophy Community (ABC) will be speaking at a World Rare Disease Day event on February 28, 2013

Jamie’s Dream Team / The Global Genes Project / RARE Meetup for World RARE disease Day

Thursday February 28 2013

St. Raphael’s School’s – Multi-Purpose Room

1154 Chislett St

Pittsburgh, PA 15206

7:00 PM to 9:00 PM

“In Your Own Genes, Be Yourself”

For more information please go to:

Categories: Courage to Shine News | Tags: , , , , , , , , , | 1 Comment

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