Global Genes® Celebrates 11th Annual
World RARE Disease Day February 28, 2018
Genes Raises Awareness for Rare Diseases with First-Ever RARE Carousel of Possible Dreams and Social Media Movement
ALISO VIEJO, Calif. (February 2, 2018) – Global Genes, a leading rare disease patient advocacy organization, and the rare disease community of more than 350 million people worldwide, are preparing for a special month of celebrations in observance of World Rare Disease Day. In addition to nationwide events, this year Global Genes has partnered with the Festival of Children Foundation to create the first-ever RARE Carousel of Possible Dreams. The inaugural fundraising event will be held February 28, 2018 in San Francisco, at the Children’s Creativity Museum, and will provide a unique opportunity for the more than 30 participating rare disease foundations to raise awareness and funds for rare diseases nationwide.
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 raises awareness throughout entire month of February, with the final day of the month recognized as World Rare Disease Day. During the month, Global Genes and rare disease advocates worldwide will host awareness and fundraising events for the more than 7,000 rare diseases.
This year, Global Genes is raising awareness in observance of World Rare Disease Day across the nation by sharing their top 3 ways to get involved:
- Recognize a RARE Caregiver Hero with a short “selfie” style video to post on social media, using the hashtags #RAREhero and #GlobalGenes.
- 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.
- Attend an event, or host and share details about your World Rare Disease Day event, and take your involvement to the next level.
“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.”
The inaugural RARE Carousel of Possible Dreams 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. For more information, to register, join a team, or donate visit globalgenes.org/sfwrddevent/.
To learn more about Global Genes and to get involved in World Rare Disease Day 2018, please visit globalgenes.org/world-rare-dis