Tag: World Rare Disease Day

A total of 150 posts are filed under World Rare Disease Day
Have You Ordered Your Blue Denim Genes Ribbons®?
Just as the pink ribbon symbolizes breast cancer awareness, the Blue Denim Genes Ribbon® is a perfect universal sign for rare and genetic… Continue Reading
World Rare Disease Day Successful Event: Jorge & Perla Portillo Throw Newport Beach Luncheon
Perla Portillo is a mom on a mission. Along with her husband, Jorge, the couple hosted an event in honor of their oldest daughter, Alanis.… Continue Reading
New Film Showcases Global Genes Program to Connect Youth Living with the Rare Disease aHUS
This World Rare Disease Day, Global Genes, a leading rare disease patient advocacy organization, is proud to debut the new film, Finding… Continue Reading
RARECast: Noah Coughlan Completes His 3,000 Mile Trek for Rare Diseases
On February 28, World Rare Disease Day, Noah Coughlan set out on a 3,100 mile run across America from New York City to San Diego’s Ocean… Continue Reading
Mother and Daughter Diagnosis Spurs Awareness Efforts
My daughter Meghan was diagnosed with Cowden’s Syndrome, (a mutation on the PTEN (Tumor Suppressor gene) in the fall of 2011. Her medical… Continue Reading
RARE Recap: Even More Coverage, World Rare Disease Day Events
Millions participated in this year’s World Rare Disease Day–so many, in fact, that we had to do a THIRD compilation post to show all… Continue Reading
RARE Recap: Even More Photos of World Rare Disease Day!
Millions participated in this year’s World Rare Disease Day–so many, in fact, that we had to do a second compilation post to show all of… Continue Reading
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