World Rare Disease Day is an annual observance to help raise awareness about rare disease and the impact of living with a rare disease on patients, families, and caregivers. Global Genes, along with rare patient advocates worldwide, raises awareness throughout the entire month of February, with the final day of the month recognized as World Rare Disease Day. This includes hosting and attending awareness and fundraising events, with international scope, for the more than 7,000 rare diseases.
This year, Global Genes is raising awareness in observance of World Rare Disease Day by sharing their top 3 ways to get involved:
1. Recognize a RARE Caregiver Hero by uploading a short "selfie"-style video, and answer the prompt: “I recognize ___________ as a RARE Caregiver Hero because __________ ,” and post the video on social media, using the hashtags #RAREhero and #GlobalGenes.
2. Upload a picture of your favorite rare patient or family into a customized World Rare Disease Day picture frame and share it on social media, using the hashtags #WRDD2018 and #GlobalGenes.
"World Rare Disease Day is a unifying day that promotes awareness and support for rare disease patients, advocates, families and disease champions in this fight. In the U.S. alone, 1 in 10 individuals live with a rare disease," stated Nicole Boice, Founder and CEO of Global Genes. "It takes a day like this to help the world take notice, and grow the much needed support. We're happy to be a part of something so amazing, and do our part to help expand engagement and involvement around the globe."
In addition, the inaugural RARE Carousel of Possible Dreams, a unique partnership between Global Genes and Festival of Children Foundation, will take place on World Rare Disease Day, Wednesday, February 28, from 6 p.m. – 8:30 p.m. at the historic LeRoy King Carousel at the Children's Creativity Museum in San Francisco. It will provide more than 30 disease foundations the opportunity to raise disease awareness and funds by hosting their own events nationwide to support the "dreams," or needs, of their respective communities.
About Global Genes
Global Genes is a leading rare disease patient advocacy organization whose mission is to connect, empower, and inspire the rare disease community. With international scope, Global Genes develops educational resources, programs, and events that unite patients, advocates, and industry experts. It is committed to fostering these meaningful connections to catalyze therapeutics and cures for the estimated 7,000 rare diseases that impact approximately 1 in 10 Americans, and 350 million people worldwide. For more information, please visit Global Genes and follow @GlobalGenes on social media to join the RARE conversation!
RARE DISEASES NEWSLETTER Volume 9, April 2018
This quarterly publication will keep you up to date on PRA’s Rare Disease Team focus, achievements, and new initiatives.