The Global Genes Project

Monday, February 28, 2011, is the 4th annual Rare Disease Day — a day when people worldwide will show their support for the millions of people suffering from rare diseases and disorders.  Rare Diseases affect over 250 million people worldwide, 30 million people in the US alone, with 75% affecting children. There are over 7,000 rare diseases that have been identified, all with very unique needs, but many with little to no support. Angelman syndrome is one of the 7,000 rare diseases. In order to really help the rare disease community and those affected by Angelman syndrome, we need to be viewed as one: one community of millions, impacted by disease. Rare disease is not so rare, and the community is much more likely to garner the support, attention, and resources it needs if it is viewed as one. It is estimated that 80% of rare diseases are caused by gene defects, and according to the Kakkis EveryLife Foundation, 95% of rare diseases do not have any FDA approved drug treatments. Since the Orphan Drug Act was enacted 28 years ago in January 1983, only 352 new drugs have been approved by the FDA for all rare diseases combined despite incentives by the federal government.

The Global Genes Project™ exists to unify, support, build awareness and raise much needed funds for those affected by rare disease. The Global Genes Project™ campaign broadly promotes the needs of the rare disease community as a whole, engaging the general public, garnering corporate support under the unifying symbol of hope: the blue denim ribbon.

Join us. Spread the word. It's as easy as wearing a pair of jeans for the "Wear That You Care" Denim Awareness Campaign for Rare Disease Day...I know my GAP family will be supporting the movement!

The ASF has partnered with the Global Genes Project to make personalized posters...Rhys has his very own.  If you want to have your very own Rhyer poster...let me know and I'll get you one to support a great cause.  Awareness is the first step.

The The Global Genes Project is a leading nonprofit rare disease advocacy organization.  "Wear That You Care™" Denim Campaign will support Rare Disease Day 2011 and to call attention to the global drug development crisis facing millions of people afflicted with rare diseases.  The "Wear That You Care™" Denim campaign is simple — all across the world people can participate in supporting the rare disease movement on Rare Disease Day 2011 by wearing a Denim Jeans Ribbon™ and their favorite pair of jeans — vaqueros, cowboybuksers, niuzaiku, farmernadrag, or dungarees ...it dosen't matter what you call them, just wear them!

"Spurring development of new treatments for thousands of rare diseases is one of the most pressing health care challenges we face in the world today," said Nicole Boice, Founder, Global Genes Project.  "The goal of our effort is to create synergy among all constituents committed to finding treatments for the millions of people living with rare diseases and to educate the public on how genetics can influence their health or lead to chronic or life threatening diseases."

Since the launch of the Global Genes Project and Hope – It's In Our Genes™ awareness campaign in February 2010, more than 150 leading corporations, organizations, hospitals and nonprofits have signed up to support rare disease awareness and educational efforts. Organizations that recently joined the effort include: Angelman Syndrome Foundation, Batten Disease Support and Research Association (BDSRA), Biotechnology Industry Organization (BIO), Children's Hospital Research Center Oakland, Healthline, Illumina, Medpedia, MLD Foundation, National Society of Genetic Counselors, Pfizer, Progeria Research Foundation and RemedyMD. The Global Genes Project has also added new supporters from China, Serbia and Turkey.

"Many rare disease foundations are starting to understand our core message -- we're all in the same boat when it comes to drug development for our individual rare diseases and there are few options in sight for millions of people," added Boice. "It's time to band together to make our voices heard and to push for major legislative initiatives that provide novel incentives to researchers and industry so they will invest the time and capital needed to develop new treatments."

A number of "Wear That You Care" denim awareness events are currently being organized around the world and hundreds of volunteers, coordinated by the Global Genes Project, are working on a multitude of outreach activities leading up to Rare Disease Day 2011.  Some of the events and activities in progress for Rare Disease Day 2011 are as follows:

• The National Institutes of Health Office of Rare Diseases Research (ORDR), in association with the Global Genes Project, is encouraging all attendees to wear their favorite pair of jeans to their day-long Rare Disease Day 2011 celebration at the Lipsett Amphitheater at the NIH Clinical Center.  Dr. Francis S. Collins, Director of the National Institutes of Health and one of the leaders of the Human Genome Project (HGP), is expected to address attendees.
• Pfizer's rare disease research and development unit based in Cambridge, MA, will be encouraging attendees at their Rare Disease Day 2011 event to wear jeans to help raise awareness.  In June 2010, Pfizer established a new research unit devoted to developing new biologics to treat rare diseases.
• Shire, one of the world's leading specialty biopharmaceutical companies, will encourage employees to wear jeans to work and plans to hand out over 5000 denim blue ribbons to employees at various corporate locations worldwide.
• Over 200 volunteers, including numerous children, have made over 20,000 Denim Jeans Ribbons™ that will be distributed to rare disease patient advocacy groups, pharmaceutical companies, biotech firms, schools and hospitals on Rare Disease Day 2011. Blue denim ribbon making efforts will continue leading up to February 28, 2011, with a goal of reaching 50,000 handmade ribbons.
• Over 300 volunteers ranging from jewelry designers to crafters are working on the 7,000 Bracelets for Hope™ campaign.  These blue denim inspired "cause bracelets" will be distributed on Rare Disease Day 2011 to children and families battling rare diseases and serve as symbol of hope to find treatments and cures.
• A number of schools have signed up to host "Wear That You Care™" denim awareness days and plan to distribute Denim Jeans Ribbons™ in an effort to support the rare disease community.

(SOURCE The Global Genes Project)