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EDITOR: Andrea Kirk
GLOBAL GENES® CELEBRATES WORLD RARE DISEASE DAY ON FEBRUARY 28, 2019
|Community in Los Angeles|
Address: 28 Argonaut Aliso Viejo, CA 92656
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TELL YOUR FRIENDS
Global Genes, a leading rare disease patient advocacy organization, launches into a month-long observance for World Rare Disease Day, recognized globally on February 28 to raise awareness for the rare disease community of more than 350 million people worldwide.
Shining light on rare patients and caregivers around the world, Global Genes takes this opportunity to share one family’s journey of hope and discovery. Seven-year-old Taylor’s diagnosis of infantile Batten disease in 2006 was grievous, but always with hope, they founded Taylor’s Tale and joined the Global Genes RARE Foundation Alliance. There, they found connections, resources, knowledge, support, compassion, all of which have helped them achieve groundbreaking victories.
Taylor is 1 out of 10 Americans who are affected by rare disease. Global Genes wants to remind everyone on World Rare Disease Day and every day, rare is not so rare.
To get involved and raise awareness for more than 7,000 rare diseases during the month of February:
Rally for rare. Visit globalgenes.org to download and print the #CareAboutRare sign, take a selfie and post on social media with #CareAboutRare and #WRDD2019. Tag a friend and challenge them to #CareAboutRare too.
Attend an event. There are countless events, fundraisers and exhibits during World Rare Disease Day. Host or take part in an event and share the details with us.
Wear Blue Denim. The Blue Denim Jeans Ribbon® is a symbol of hope for more than 7,000 small rare disease communities around the world. Wearing a denim ribbon shows support for World Rare Disease Day. Ribbons may be requested on globalgenes.org for local events, the workplace, school clubs, etc.
Don’t forget to wear blue jeans and a denim ribbon on February 28!
NOTE: It is always a good idea to verify date, time, location and other information prior to going.
Eye Spy LA is not responsible for the accuracy of this information.
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