Navigation Links
7,000 Bracelets For Hope™ - A Rare Disease Awareness Campaign

DANA POINT, Calif., Nov. 1, 2010 /PRNewswire-USNewswire/ -- The Global Genes Project (, 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 Families battling rare diseases can also sign-up to become recipients of blue denim inspired bracelets made by project volunteers.

About The Global Genes Project

The Global Genes Project is a grassroots effort with the goal to increase awareness about the prevalence of rare diseases worldwide. The RARE Project and Children's Rare Disease Network is a registered 501(c)(3) non-profit organization. For more information, visit or

SOURCE Children's Rare Disease Network; The Global Genes Project
Copyright©2010 PR Newswire.
All rights reserved

Related medicine technology :

1. Smart Sense(TM) From RF Technologies Upgrades Safe Place(R) Bracelets Using Industry-Leading Infant Security Technology, Fit and Comfort
2. Sixty-One Percent of Newly Diagnosed Parkinsons Disease Patients Do Not Receive Any Drug Treatment in the First Year of Diagnosis
3. Kosans Motilin Receptor Agonist, Licensed to Pfizer, Enters Phase 1 Clinical Trial in Gastroesophageal Reflux Disease
4. Avicena Scientific Collaborator Advances Program for Using Energy Enhancing Molecules to Treat Neuromuscular Diseases
5. ImmuneRegen BioSciences, Inc. Demonstrates Radilex(TM) Increases Disease-Fighting White Blood Cells
6. Upstream Biosciences Acquires Innovative Platform Technology and Drug Candidates for Tropical Parasitic Diseases
7. Baxter and The Alzheimers Disease Cooperative Study Group to Pursue a Phase III Study of Gammagard Liquid in Patients With Alzheimers Disease
8. Four Analyses of Three-Year Clinical Data Suggest CYPHER(R) Sirolimus-Eluting Coronary Stent May Provide Alternative to Surgery for Patients with Multivessel Disease
9. Peregrine Researchers Report Data Showing Bavituximabs Potential to Shrink Human Prostate Tumors in Model of Relapsed Disease
10. Public Forum to Discuss Addiction as a Treatable Disease and Highlight National Alcohol and Drug Addiction Recovery Month
11. K-State Researchers Bringing Expertise to Kansas City Symposium on Disease and National Security
Post Your Comments:
(Date:12/1/2015)...  The migration to value-based care will require ... that help patients stay healthy and reduce healthcare ... enabled, incorporate care guidelines and be reflective of ... also allow all stakeholders to collaborate across care ... That is the vision, however, research by Chilmark ...
(Date:12/1/2015)... -- --> --> ... (NKI-AVL), among the world,s largest and most prestigious ... Icon™, the company,s latest generation stereotactic radiosurgery system ... --> With the option to use ... Knife Icon offers greatly enhanced flexibility in how ...
(Date:12/1/2015)... , December 1, 2015 ... segments the concerned market with analysis and forecast of ... orthobiologics report defines and segments the concerned market with ... to the Market Research Report "North American Orthobiologics Market ... Factors & Spinal Stimulation, Stem Cell Therapy, Viscosupplementation), by ...
Breaking Medicine Technology:
(Date:12/1/2015)... Middletown, PA (PRWEB) , ... December 01, 2015 ... ... separate environments; however, there are professionals who believe that with innovative technologies and ... services allows the patient to get the benefit of a dual-approach to his ...
(Date:12/1/2015)... ... 01, 2015 , ... CloudLIMS today announced that it is ... under the New Products and Services category for its innovative product offering, BioTracer. ... that helps labs organize data and track samples with storage inventories. BioTracer's ...
(Date:12/1/2015)... ... December 01, 2015 , ... The importance of volumetric ... the focus of numerous abstracts accepted for presentation here, at the 101st Annual ... abstracts highlight the use of Volpara Solutions’ quantitative breast imaging software tools for ...
(Date:12/1/2015)... ... December 01, 2015 , ... SAN ... today announced that the organization has awarded Education and Developmental Therapies (EDT), an ... Award. The award celebrates exceptional special needs providers that excel in synthesizing the ...
(Date:12/1/2015)... ... December 01, 2015 , ... ... the care management and population health arenas, is pleased to announce that VIP ... containment services, has successfully implemented the ACUITY Complete Care™ Management to back their ...
Breaking Medicine News(10 mins):