Global Genes Project launches new campaign to create awareness about rare diseases

Children's Rare Disease Network; The Global Genes ProjectNov 1 2010

The Global Genes Project (www.globalgenesproject.org), a non-profit advocacy organization that aims to raise awareness about the prevalence of rare diseases worldwide, today launched the 7,000 Bracelets for Hope™ campaign. The 7,000 Bracelets for Hope™ campaign is designed to draw attention to an estimated 7,000 different chronic, life-threatening and fatal rare diseases and disorders affecting approximately 30 million Americans and millions more globally.

The 7,000 Bracelets for Hope™ awareness campaign is designed around a denim blue jeans theme and the color blue which is associated with health, healing and faith. The vast majority of the 7,000 rare diseases identified by the National Institutes of Health (NIH) are caused by gene defects.

"Cause bracelets are widely available for breast cancer and heart disease but there has never been a unifying symbol, color or bracelet that represents the rare disease community worldwide," said Nicole Boice, founder, Global Genes Project. "Since launching the 7,000 Bracelets for Hope™ campaign a few weeks ago, we have already received unique bracelet designs made from cut strips of recycled blue jeans as well as vintage blue glass and crystal beads. The creativity from volunteers is truly inspiring!"

A Global Crisis - Only 352 Rare Disease Drugs Developed Over Past 27 Years

In January 1983, Congress passed the Orphan Drug Act to encourage pharmaceutical and biotechnology companies to develop drugs for rare diseases that have small patient populations. In the United States, rare diseases are defined as affecting fewer than 200,000 individuals per rare disease and prevalence varies greatly, from as few as 300 for a rare enzyme deficiency to just under 200,000 for cancer of the thyroid gland.

Despite market incentives put in place to induce companies to develop drugs for small markets of individuals with rare diseases, statistics from the FDA show that over the past 27 years only 352 new drugs have been brought to market to treat tens of millions of people suffering from approximately 7,000 distinct rare conditions. According to recent data released by pharmaceutical giant GlaxoSmithKline, less than 10% of patients with rare diseases are currently being treated worldwide.

"We expect our blue denim inspired cause bracelets to help create recognition surrounding the immense challenges facing the global rare disease community and the importance of developing new drugs for patients," added Boice. "It's time to 'Care about Rare' and show support for this social concern because the economic impact on society is incalculable. With over 15 million children in the United States afflicted with chronic rare diseases, finding new treatments should be a top national priority."

Volunteers To Make Handcrafted Cause Bracelets for Rare Disease Families

The 7,000 Bracelets for Hope™ awareness campaign will be ongoing through February 2011 and will culminate around World Rare Disease Day, a globally recognized day of support for the approximately 250 million people affected by rare disease.

"There are millions of children and families battling rare diseases that do not have foundations to support their awareness efforts or the funding required to propel research forward to fuel new drug development," added Boice. "The 7,000 Bracelets for Hope™ campaign is a way to let rare disease families know they are not forgotten and is an excellent opportunity for jewelry designers, artists, crafters, church groups and children to donate bracelets and show support for this neglected community."

The Global Genes Project website provides detailed information related to submitting and receiving one of the 7,000 Bracelets for Hope™ designs. Individuals and companies interested in participating by donating bracelets to the awareness campaign can sign up on the Global Genes Project website at www.globalgenesproject.org. Families battling rare diseases can also sign-up to become recipients of blue denim inspired bracelets made by project volunteers.