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Friday, February 22, 2013

World Rare Disease Day

THURSDAY, FEBRUARY 28th 
is
RARE DISEASE DAY

World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families. Please join Brian, Becca, Ian and I, as well as may other patients, families, friends, caregivers, scientists, physicians, researchers, health care providers, policy experts to raise rare and genetic diseases awareness. The Blue Denim Genes Ribbon™ is a perfect universal sign for rare and genetic disease awareness and helps unify a fractured community of thousands of small diseases who have not had a collective voice. I have Blue Denim Genes Ribbons to share...please let me know if you would like one to show your support for Ian as well as all the others (if 30 million Americans live with a rare disease {1/10 of the population} and 1/3 {10 million} of them it took 5 years or more to get a diagnosis). For more information check out one of these two sites:
World Rare Disease day http://www.rarediseaseday.org/

Wear That You Care, Global Genes http://globalgenes.org/


2 comments:

Anonymous said...

I have been looking every where to order ribbons my 4yr old was diagnosed with Hpp. Please email me norris6kids@gmail com thank you

Anonymous said...

Kendra Bober Thank you for letting us know about this important day!

Tamara Jayne Flax Yeah for Becca! No more braces! Ian, keep up the good work. Slow and steady.