Tag: World Rare Disease Day

A total of 149 posts are filed under World Rare Disease Day
unnamed-11
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
Screen Shot 2016-02-26 at 2.10.14 PM
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 headshot noah coughlan
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
JFRG9
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
10993414_10205889216219862_9025339015650640831_n-1
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
image_4
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
MD House Resolution
Rare Recap: Here’s How Some of You Spent World Rare Disease Day!
Millions participated in this year’s World Rare Disease Day! At Global Genes, we love to see the rare community come together for a great… Continue Reading