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Tuesday, January 13, 2015

Living with a Rare Disease - DAY-BY-DAY, HAND-IN-HAND

The theme of this years World Rare Disease Day is LIVING WITH A RARE DISEASE

Rare Diseases have enormous repercussions for the whole family. Living with a rare disease becomes a daily learning experience for patients and families. Though they have different names and different symptoms, rare diseases impact the daily lives of patients and families in similar ways. How to find a diagnosis, how to access treatments, how to find appropriate expertise, how to work with a team of caregivers, how to operate special equipment, how to administer treatments, how to identify and access social services, how to manage the economic burden of living with a rare disease and how to ensure the well-being of the entire family and balance priorities...just to name a few. 

Last year, I asked everyone to wear either a Blue Denim Genes Ribbon(TM) or their jeans and send me photos...I want to do the same this year...but I want to beat last year with more jeans (we had 44 least year) ...whose in....I hope you are. Need a ribbon, let me know I will get them to you. Need to know how to get me photos, just ask, we will figure it out. While wearing your jeans make sure to tell those around you why you are wearing them. Let's raise awareness for Ian , our family and others like us who are impacted by rare diseases.  

The Global Genes Blue Denim Genes Ribbon™Rare Disease Day email banner
So mark your calendars to wear jeans on February 28, 2015 for World Rare Disease Day to help raise awareness HAND-IN-HAND.

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