Tag: World Rare Disease Day

A total of 153 posts are filed under World Rare Disease Day
Ghana Marks World Rare Disease Day for the First Time
This year’s World Rare Disease Day marked the first time an event has been organized in Ghana to support rare diseases. The event, dubbed… Continue Reading
5 Things I’ve Learned About Living With a Rare Disease
It has been over 2 years now since my 4 year old son was diagnosed with a rare disease. The first year was spent getting our bearings and… Continue Reading
Abeona Therapeutics Inc. Rings Closing Bell at Nasdaq on World Rare Disease Day
Congratulations to our friends at Abeona Therapeutics Inc. (ABEO), a leading clinical-stage biopharmaceutical company focused on developing… Continue Reading
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