Global Genes Project
Encyclopedia
The Global Genes Project is a grassroots
project designed to raise rare disease awareness, and fund research to cure rare diseases.
advocacy organization dedicated to raising awareness for the more than 7000 distinct rare diseases that afflict an estimated 30 million people in the United States and approximately 250 million people worldwide.
Started as an awareness project of the Children's Rare Disease Network in 2009, the Global Genes Project gained widespread attention for using the clever concept of jeans and denim in its awareness programs as the majority of rare diseases are caused by gene defects. The organization has incorporated a denim blue ribbon as its international symbol of rare disease awareness and created the slogan, "Hope – It's In Our Genes."
The Global Genes Project has played a fundamental role is raising awareness of rare diseases globally and has been actively involved in promoting annual World Rare Disease Day efforts.
A few of the prganizations that support the Global Genes Project 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.
In November 2010, the Global Genes Project announced the 7,000 Bracelets for Hope™ cause bracelet campaign. Companies, jewelry designers, artists, crafters, church groups and other volunteers produced unique blue inspired bracelets that were distributed to children suffering from rare diseases on Rare Disease Day 2011.
In February 2011, the Global Genes Project launched the "Wear That You Care" campaign leading up to World Rare Disease Day 2011.
The Global Genes Project was founded by Nicole Boice in 2008 and is located in Dana Point, CA.
According to the National Institutes of Health (NIH), there are more than 7,000 different types of rare diseases
Shire, a global specialty bio pharmaceutical company, estimates that rare diseases affect nearly 250 million people worldwide
95% of rare diseases have no FDA approved drug treatments, according to date released by the Kakkis EveryLife Foundation
Since 1983, less than 400 new drugs have been approved by the FDA for tens of millions of people suffering from thousands of rare diseases despite incentives put in place by the federal government
Grassroots
A grassroots movement is one driven by the politics of a community. The term implies that the creation of the movement and the group supporting it are natural and spontaneous, highlighting the differences between this and a movement that is orchestrated by traditional power structures...
project designed to raise rare disease awareness, and fund research to cure rare diseases.
History
The Global Genes Project (www.globalgenesproject.org), is a leading non-profit rare diseaseRare disease
A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear...
advocacy organization dedicated to raising awareness for the more than 7000 distinct rare diseases that afflict an estimated 30 million people in the United States and approximately 250 million people worldwide.
Started as an awareness project of the Children's Rare Disease Network in 2009, the Global Genes Project gained widespread attention for using the clever concept of jeans and denim in its awareness programs as the majority of rare diseases are caused by gene defects. The organization has incorporated a denim blue ribbon as its international symbol of rare disease awareness and created the slogan, "Hope – It's In Our Genes."
The Global Genes Project has played a fundamental role is raising awareness of rare diseases globally and has been actively involved in promoting annual World Rare Disease Day efforts.
A few of the prganizations that support the Global Genes Project include: Angelman Syndrome Foundation, Batten Disease Support and Research Association (BDSRA), Biotechnology Industry Organization (BIO), Children's Hospital Research Center Oakland, Healthline
Healthline
Healthline Networks is a privately-owned provider of online health information for publishers, advertisers and health plans.-Overview:Healthline Networks is a privately-owned provider of online health information for publishers, advertisers and health plans. Healthline provides information on its...
, Illumina
Illumina
Illumina is the second album by Alisha's Attic to be released worldwide in 1998. Three tracks were released from it, these being "The Incidentals", "Wish I Were You" and "Barbarella". It peaked at #15 on the UK album chart...
, Medpedia
Medpedia
Medpedia is a collaborative project launched on 17 February 2009. Its aim is to create an open access online medical wiki encyclopedia in association with Harvard Medical School, Stanford School of Medicine, Berkeley School of Public Health, University of Michigan Medical School, the U.K. National...
, MLD Foundation, National Society of Genetic Counselors, Pfizer
Pfizer
Pfizer, Inc. is an American multinational pharmaceutical corporation. The company is based in New York City, New York with its research headquarters in Groton, Connecticut, United States...
, Progeria Research Foundation and RemedyMD.
In November 2010, the Global Genes Project announced the 7,000 Bracelets for Hope™ cause bracelet campaign. Companies, jewelry designers, artists, crafters, church groups and other volunteers produced unique blue inspired bracelets that were distributed to children suffering from rare diseases on Rare Disease Day 2011.
In February 2011, the Global Genes Project launched the "Wear That You Care" campaign leading up to World Rare Disease Day 2011.
The Global Genes Project was founded by Nicole Boice in 2008 and is located in Dana Point, CA.
Rare Disease Statistics
1 in 10 Americans suffer from rare disease (approximately 30 million people or 10% of the US population)According to the National Institutes of Health (NIH), there are more than 7,000 different types of rare diseases
Shire, a global specialty bio pharmaceutical company, estimates that rare diseases affect nearly 250 million people worldwide
95% of rare diseases have no FDA approved drug treatments, according to date released by the Kakkis EveryLife Foundation
Since 1983, less than 400 new drugs have been approved by the FDA for tens of millions of people suffering from thousands of rare diseases despite incentives put in place by the federal government