World Rare Disease Day

Rep. Carter Raises Awareness for Undiagnosed Diseases with CAL Network Act

Official Portrait 2013

Video – Rare Disease Day In recognition of Rare Disease Day, Congressman John Carter (TX-31), member of the Rare Disease Caucus, is working to raise awareness about a bill he has sponsored, aimed at creating a disease registry for undiagnosed illnesses. Sadly, many people with undiagnosed […]

#HealthTalk: Global Genes Pairs up with for Rare Disease Day Twitter Chat!


Join us Friday, February 28th at 12:00-1:00pm EST for a twitter chat with! We’ll be discussing all things Rare Disease–resources, stats, and how patients can receive the most optimum care. Contribute your thoughts using the hashtag #HealthTalk About Global Genes Global Genes is a […]

4th Annual Sanford Rare Disease Symposium 2/28/2013


Name Liz Donohue Company Sanford Research Email Location of Event Sioux Falls, South Dakota Relevant Website Rare Disease | Genetic Condition All rare diseases, but there will be specific presentations on Ataxia, Ataxia-Telangiectasia, Friedreich’s Ataxia Date of Event 02/28/2014 Name of Event 4th […]

“Especially Beautiful” Models Raise Awareness of Rare Disease


Special needs models will be the focal point of the 1st Annual ‘Especially Beautiful Fashion Show’ in Orange County. These models, all special needs children and teens, are joining their friends Cali, 15, and Ryann, 4, Spooner in raising visibility about World Rare Disease Day. […]

$15,000 in 15 Days for Dup15q/Wear Blue for Dup15q

Microsoft Word - 15K postcard.docx

Company Dup15q Alliance Location of Event worldwide Relevant Website Rare Disease | Genetic Condition 15q11-13 duplication syndrome (dup15q syndrome) Date of Event 02/28/2014 Name of Event $15,000 in 15 Days for Dup15q/Wear Blue for Dup15q Event Details Each year from Valentine’s Day to Rare […]

Rare Disease Day Event in Brockton, MA


Location of Event Christ Church Brockton MA Rare Disease | Genetic Condition 2P 22.2-22.1 5.2KB (deletion) Date of Event 02/28/2014 Name of Event A Rare Day Event Details As a church family we (goal 60 people) will dress in BLUE jeans and show our support […]

Global Genes to Celebrate World Rare Disease Day on Lifetime TV’s “The Balancing Act”


Global Genes is excited to announce that we will be a guest on Lifetime TV’s “The Balancing Act” in their Behind the Mystery: Rare and Genetic segment airing on 2/28/2014, World Rare Disease Day. The segment will feature President and Founder, Nicole Boice, and Managing […]