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Last updated on April 19, 2014 at 7:35 EDT

Global Genes Kicks Off #WearThatYouCare Events For World Rare Disease Day 2013

February 7, 2013

ALISO VIEJO, Calif., Feb. 7, 2013 /PRNewswire-USNewswire/ — It’s time to Care about Rare(TM). Global Genes Project (globalgenes.org), a leading patient advocacy organization representing the rare and genetic disease community, is inviting industry partners, patients, caregivers, family and friends of the tens of millions of people who suffer from rare and genetic diseases to Wear That You Care(TM) during the month of February to support the sixth annual World Rare Disease Day on February 28, 2013.

World Rare Disease Day is a day of advocacy to call attention to rare conditions in the United States and across the globe. This day is celebrated on the last day of February each year. Over 300 leading partner organizations and foundations and thousands of advocates and supporters have already signed on to participate in the popular Wear That You Care(TM) and Blue Denim Genes Ribbon(TM) awareness campaign.

“The vast majority of rare and genetic diseases have small patient populations, and many organizations don’t have ribbons to represent their specific rare or genetic disease,” said Nicole Boice, president, Global Genes Project. “Our movement 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 and genetic diseases.”

The Wear That You Care(TM) campaign by Global Genes is a simple and unique awareness event. All across the world people participate in supporting the rare and genetic disease movement by wearing the Blue Denim Genes Ribbon(TM) 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(TM) has become the universal sign for rare and genetic disease awareness since being introduced in 2009.

“Over 100,000 Blue Denim Genes Ribbons(TM) have been distributed in the past few weeks for upcoming awareness events,” added Boice. “We are incredibly grateful to our industry partners and volunteers who have supported or ribbon making efforts and allowed us to make awareness ribbons available to patients, caregivers and supporters.”

As part of this awareness campaign, patients, advocates and supporters of the rare disease community can submit creative Wear That You Care(TM) photos through Global Genes Facebook page. Global Genes is also launching a Twitter and Instagram social media campaign where supporters can tag their photos or posts with hashtags #WearThatYouCare and #CareAboutRare.

Rare Facts – Rare is Not So Rare

About 7,000 known rare diseases have been identified around the world affecting approximately 300 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, 95% of rare diseases do not have a single FDA approved drug treatment.

February Events for Rare Disease Awareness

Leading up to World Rare Disease Day 2013, Global Genes is working with various organizations throughout the month of February to increase rare disease awareness and education. Below are a few upcoming events.

  • Rare Disease Legislative Associates (RDLA) 3rd Annual Cocktail Reception and Documentary Film screening featuring Here. Us. Now. Film (Washington, DC) – Commissioned by the Kauffman Foundation, the film will be screened on Monday, Feb. 25, at the Carnegie Institution of Science, at 5 p.m. Panel discussion to include Dr. Christopher Austin, Director, National Center for Advancing Translational Sciences (NCATS). More info: http://globalgenes.org/world-rare-disease-day-events/
  • Rare Disease Lobby Day on Capitol Hill (Washington, DC) – Rare and genetic disease advocates from all over the United States will participate in Rare Disease Lobby Day on Wednesday, Feb. 27. More info: http://rareadvocates.org/lobby-day/
  • Little Miss Hannah Foundation’s 3(rd) Annual “Jeans for Genes Day” School Awareness Event (Henderson, Nevada) – Over 2,500 elementary school students at Vanderburg, Lamping, and Barlett elementary schools will receive an age-appropriate education on the genetics of rare disease and will participate in creating personalized cards of hope for children affected by rare diseases. Blue Denim Genes Ribbons(TM) will be made and distributed. The event is funded by the Genzyme Patient Advocacy Leader 2012 Award.
  • FIRST Foundation for Ichthyosis and Related Skin Types (Wynnewood, Pennsylvania) will be organizing students and faculty at Penn Wynne Elementary School to support the cause by wearing jeans and the Blue Denim Genes Ribbon(TM).
  • Jamie’s Dream Team, a nonprofit dedicated to easing the burden of those living with serious injury or illness, will be hosting a World Rare Disease Day RARE Meetup(TM) in Pittsburgh, Pennsylvania, and handing out awareness materials and ribbons.
  • Albany Medical College and Albany Medical Center will be hosting a rare disease forum geared towards patients, families, caregivers, and medical staff. Multiple speakers will be sharing ideas on dealing with rare and complex medical disorders.
  • Rare Disease Day at the National Institutes of Health (Bethesda, Maryland): A 2-day-long event on the NIH campus will be held in Natcher Auditorium, Building 45, from 8:30 a.m. to 5:00 p.m. on Thursday, Feb. 28(th) and from 8:30 a.m. to 3:00 p.m. and on Friday, March 1st. NIH encourages all attendees to wear their favorite pair of jeans. Global Genes will be handing out the Blue Denim Genes Ribbons(TM) to all attendees. More info: http://rarediseases.info.nih.gov/RareDiseaseDay.aspx
  • Additional community events are located on the Global Genes website: http://globalgenes.org/2013-world-rare-disease-day-community-events/

About Global Genes Project
Global Genes Project is a leading global rare and genetic disease patient advocacy organization. Global Genes works to build and unify a global rare and genetic disease community and positively impact patients in their lifetime by offering programs designed to educate, empower, and support patients, advocates, foundations, and other rare disease focused organizations.

For more information on Global Genes: http://www.globalgenes.org
For more information on Rare Disease Day: http://globalgenes.org/world-rare-disease-day/
To order Blue Denim Genes Ribbons(TM): http://globalgenes.org/blue-denim-genes-ribbon/
Facebook: https://www.facebook.com/globalgenesproject
Twitter: @GlobalGenes

SOURCE Global Genes Project


Source: PR Newswire