ALISO VIEJO, Calif., Feb. 12, 2015–Global Genes, a leading patient advocacy organization with the mission to eliminate the challenges of rare disease, is inviting industry partners, patients, caregivers, family and friends of the tens of millions of people who suffer from rare diseases to join in support of World Rare Disease Day on February 28th. Global Genes will kick off the #CareAboutRare campaign as part of a series of national and global events that bring awareness and resources to the 30 million Americans and 350 million people worldwide that are impacted by rare diseases. Events and programs will continue throughout the month of March.
World Rare Disease Day is a day of advocacy to call attention to rare disease in the United States and across the globe. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. Over 600 leading partner organizations and foundations and thousands of advocates and supporters have already signed on to participate in Global Genes’ popular Wear That You Care™ and Blue Denim Genes Ribbon™ awareness campaigns.
“The vast majority of rare diseases have small patient populations, and many organizations don’t have ribbons to represent their specific rare disease,” said Nicole Boice, Founder & CEO of Global Genes. “This campaign helps unify a fractured community of thousands of small diseases and millions of people who have not had a collective voice. Together we can gain the momentum and exposure needed to influence changes that can lead to lifesaving research and treatments for people with rare diseases.”
The Care About Rare campaign is a simple and unique awareness opportunity. All across the world people participate in supporting rare disease awareness and Wear That You Care by wearing the Blue Denim Genes Ribbon and their favorite pair of jeans on World Rare Disease Day. Just as the pink ribbon symbolizes breast cancer awareness and the red dress symbolizes heart health, the Blue Denim Genes Ribbon has become the universal sign for rare disease awareness since its inception in 2009. Wear That You Care campaigns take place locally—supporters often urge their offices, teams or other groups to wear jeans on a specific day and make a donation.
“Over 200,000 Blue Denim Genes Ribbons have been distributed to over 15 countries in the past few weeks for upcoming awareness events,” added Boice. “We are incredibly grateful to our industry partners and volunteers who have supported our ribbon making efforts and allowed us to make awareness ribbons available to patients, caregivers and supporters.”
Supporters can also participate in this awareness campaign through social media. Patients, advocates, caregivers and friends can submit creative Wear That You Care photos through the Global Genes Facebook page, as well as Twitter and Instagram where supporters can tag their photos or posts with
hashtags #WearThatYouCare, #WRDD2015 and #CareAboutRare. Additionally, supporters can visit www.globalgenes.org/CareAboutRare and upload their photo into photo frames to use as social media profile images to further help spread awareness.
Rare Facts – Rare is Not So Rare
About 7,000 known rare diseases have been identified around the world affecting approximately 350 million people. It is estimated that about 80 percent of rare diseases are genetic and about half of all rare diseases affect children. As many as 30 million Americans (1 in 10 people) suffer from a rare disease, often struggling not just from the medical condition itself, but also to get proper diagnosis, information and care. Rare diseases impact more people than AIDS and cancer combined. However, only 5% of rare diseases have a single FDA approved drug treatment.
February/March Events for Rare Disease Awareness
Leading up to World Rare Disease Day 2015 and throughout the month of March, Global Genes is working with various organizations to increase rare disease awareness and education. Below are several upcoming events:
- Rare Disease Legislative Associates (RDLA) Week on Capitol Hill (Washington, DC) – February 23-27, Washington DC. More information here.
- Rare Disease Lobby Day on Capitol Hill (Washington, DC) – Rare disease advocates from all over the United States will participate in Rare Disease Lobby Day on Wednesday, February 25. More info here
- Grand Rounds focused on Rare Disease – Children’s Hospital of Orange County (Santa Ana, CA) on Wednesday, February 25. Children’s Hospital of The King’s Daughters (Norfolk, VA) on Friday, March 6.
- Tweet Chat in Partnership with Wego Health – Focusing on community events and facts & stats surrounding World Rare Disease Day. Thursday, February 19 at 2PM EST, participants can log on to Twitter and follow hashtags #RARETalk and #hachat to share ideas and win Global Genes & Wego Health swag bags, Walgreens gift cards, and more!
- UC Irvine Health Sciences Luncheon (Irvine, CA) – Virginia Kimonis, M.D., M.R.C.P. in collaboration with Global Genes, will be hosting a special luncheon and tour to present discoveries and treatments in rare disease, and share how families in Orange County can benefit from cutting edge research and scientific advances Wednesday, February 25, 2015 12:00 – 2:00PM. RSVP by February 17 to Erika Fisher (949) 824-2886 or [email protected]
- Global Genes 1st Annual Denim Dash Virtual 5k Run/Walk for Rare Disease (Virtual/Global) March 21-29, 2015 –The Denim Dash was created through collaborative efforts between Orphan Drug Solutions and Global Genes as their first annual virtual 5K event. This virtual 5k is designed to ensure that anyone, anywhere, can participate and show their support and raise awareness for patients, family and friends of the Rare Disease Community. The cost to register is $35 and includes Denim Dash t-shirt, race bib and Blue Denim Genes Ribbon. In order to receive a t-shirt, registration must be completed by 3/6/2015. Register here.
- Rare Disease Day at the National Institutes of Health (Bethesda, Maryland): On February 27, 2015, the National Institutes of Health (NIH) will celebrate the eighth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by NCATS’ Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; other Federal Government agencies and supporting nonprofit foundations. More information here.
- Give RARE (Online) – Give RARE, on March 3rd, is a single day for the world to GIVE to RARE disease! In partnership with Zenzaga, the Give RARE technology platform allows rare disease nonprofits to sign-up easily to create a donation page, raise funds for their cause and get access to win prize funds from sponsors. Grants will be given out through the day. Join the movement and support your favorite cause at https://giverare.org or register your cause today!
- I Love Someone RARE & Beautiful T-shirts in Partnership with the Gwendolyn Strong Foundation – Global Genes and the Gwendolyn Strong Foundation have partnered once again by bringing back the popular “I love someone RARE & beautiful.” tee in celebration of World Rare Disease Day. This is a LIMITED EDITION item, so get them while they last! They can be purchased here.
- Sixth Annual Rare Disease Day Symposium at Sanford│Burnham Medical Research Institute in San Diego, CA. Focused on Treating Disease with Sugars– February 27-28, 2015. More information here.
- Various events are being held all over the world by Global Genes’ Industry Partners: Alexion, Biomarin, Connexion Healthcare, Dicerna Pharmaceuticals, Discovery USA, Horizon Government Affairs, Horizon Pharma, Novartis Oncology, Premier Research International, Raptor Pharmaceuticals, Retrophin, Sarepta Therapeutics, Shire, Synageva BioPharma, and TGen.
Additional community events are located on the Global Genes website: https://globalgenes.org/2015-world-rare-disease-day-community-events/
About Global Genes – Allies in Rare Disease
Global Genes™ is a leading rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease by providing patients with educational tools, building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 35 million Americans and over 350 million people worldwide.
For more information about Global Genes, please visit the following links:
Global Genes loves their city! See the many ways that GG has affected the RARE community is Orange County and learn how you can support their efforts on Orange County’s very own day of giving April 21st! Don’t want to wait till the 21st to support GG? Donate Now!