Global Genes Project E-News
December 1, 2011
PATIENT STORIES OF HOPE AND INSPIRATION – GET INVOLVED! SHARE YOUR STORY! – DANA POINT, Calif. – Nothing can portray the fight, the struggles, the daily challenges, the joy, the inspiration, the hope, as a story can. As we approach the month of February, and the celebration/recognition of World Rare Disease Day 2012, we would like to take this as an opportunity to share our community’s stories with the world!
PatientsLikeMe and R.A.R.E Project Unite to Find and Connect One Million Rare Disease Patients
November 7, 2011
Nonprofit and "Not Just for Profit" Announce Collaboration at
PartneringForCures Event
NEW YORK, NY – Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions. The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign in 2012.
Help Children With Rare Diseases Get the New Medicines They Need
July 5, 2011
DANA POINT, Calif. – Having a seriously ill child is always difficult and painful. It’s even more so when a child’s illness is one of the 7,000 rare diseases for which cures and treatments are hard to find.
Rare diseases affect more than 15 million children in the United States. A disease is considered rare if it affects less than 200,000 people; however the majority of rare diseases are considered ‘ultra rare’ meaning that they affect less than 6,500 patients. Diseases such as Cystic Fibrosis, Muscular Dystrophy, Huntington’s disease and pediatric cancers are some of the better known rare diseases that strike children and adults. But there are thousands more that touch only a few hundred lives and are virtually unknown to the broader public.
Read all about it »
Global Genes Project E-News
March 15, 2011
IT'S A WRAP, RARE DISEASE DAY 2011 – DANA POINT, Calif. – The 4th Annual World Rare Disease Day took place February 28, 2011 with a fanfare of activities worldwide! Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased attention and engagement than previous years.
Once again, Global Genes Project™ helped support and create numerous opportunities to raise awareness for this important day through its grassroots campaigns and programs.
RemedyMD and the Children’s Rare Disease Network Announce Plan to Give Away Free Rare Disease Research Registry Valued up to $50,000 via Contest
February 25, 2011
DANA POINT, Calif. and SALT LAKE CITY, February 25, 2011 – In the spirit of Rare Disease Day on Feb. 28th, the Children’s Rare Disease Network (www.crdnetwork.org) has received a donation from RemedyMD® (www.remedymd.com) of its RegistryOnDemand™ product specifically created for rare disease research organizations, and in turn the CRDN is announcing plans to give this research registry tool away via contest to one lucky winner in the rare disease community. This medical research software allows for the collection of disease data from any available sources including self-reported patient longitudinal data, and features powerful query and analysis tools to accelerate breakthroughs in treatments or cures.
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7,000 Bracelets for Hope™ Campaign Raises Awareness For Over 7000 Rare Diseases. Global Genes Project To Distribute Thousands of Donated Blue Bracelets To Children and Parents on Rare Disease Day 2011
February 08, 2011
DANA POINT, Calif., February 8, 2011 – February 28, 2011, is Rare Disease Day, but at the Global Genes Project, it's rare disease awareness day every day of the year. Leading up to Rare Disease Day 2011, the Global Genes Project will be calling attention to the lack of drug treatments available for millions of people suffering from chronic, life-threatening and fatal rare diseases through its 7,000 Bracelets for Hope™ and Wear That You Care™ awareness campaigns.
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Global Genes Project Announces “Wear That You Care™” Denim Awareness Camaign for Rare Disease Day 2011
January 26, 2011
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. According to statistics from the National Institutes of Health (NIH), there are approximately 7000 different rare diseases that together affect over 25 million Americans and about 250 million people globally.
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Hey Now, You're a Rock Star
November 29, 2010
Blondie's Debbie Harry and Poison’s Brett Michaels are featured in a new GQ Magazine spread along with some of the world’s leading scientists who are trying to unlock the mysteries of the costliest diseases faced by mankind.
Listen to the Podcast »
2010 Rock Stars of Science™ Dr. Emil Kakkis Honored as a 2010 Rock Star of Science
November 17, 2010
Dr. Emil Kakkis represents rare disease as a Rock Doc in this year’s Rock Star of Science Campaign in GQ Magazine’s ‘Man of the Year Issue’ this December!
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7,000 Bracelets For Hope™ - A Rare Disease Awareness Campaign
November 1, 2010
Global Genes Project Launches Blue Denim Inspired 'Cause Bracelets' To Be Distributed To Families Facing 7000 Different Types of Rare Diseases
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.
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Global Genes Quarterly Conference Call Overview
October 28, 2010
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October 15, 2010
Get updates on the Pepsi Refresh Grant Competition, the September recojeans Fashion Show and Charity Auction, 7000 Bracelets For Hope, Our Oct. 28th Quarterly Conference Call, Successes in utilizing Global Genes, and a Community Show and Tell.
Read all about it »
Vote4Hope.org Videos
September 17, 2010
http://www.youtube.com/watch?v=df44sox_Ofs
http://www.youtube.com/watch?v=X0tP4o8BCSc
http://www.youtube.com/watch?v=kU71JVV35UM
The Global Genes Project Aims to Battle Rare Disease Through the 'Vote4Hope' Campaign and Pepsi Refresh Competition
September 14, 2010
Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As 'Ambassadors of Hope' To Win $250K Pepsi Grant For The Global Genes Fund
All Kids Deserve To Have Hope For A Cure – The 'Vote4Hope' Pepsi Refresh Rare Disease Campaign starts today. The Children's Rare Disease Network (www.crdnetwork.org) and The Global Genes Project (www.globalgenesproject.org) are inviting the public, as well as caregivers, family and friends of the millions of children who suffer from rare diseases and disorders, to 'Vote4Hope' throughout September during The Pepsi Refresh Project.
The 'Vote4Hope' Rare Disease campaign is designed to help drive awareness for the unmet medical needs of the global rare disease community, and to support the development of the Global Genes Project.
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The Global Genes Project Charity Benefit and Fashion Week Kick Off!
September 7, 2010
New York, NY. September 2010: To kick off New York Fashion Week on September 9th, reco jeans is hosting a charity event to support the Global Genes Project. Held at Greenhouse from 6:00-9:00PM, the night will include a runway show of reco jeans’ newest collection, a silent auction featuring travel packages and high end skincare, eco-cocktails, and hors d’oeuvres. Tickets are $25.00 in advance and $35.00 at the door; all proceeds from the evening will benefit the Global Genes Project. Join the efforts prior with an appearance on the CBS Early Show on September 8th! https://www.brownpapertickets.com/viewsales.html?e_id=122425.
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Global Genes Project E-Newsletter
August 16, 2010 • Volume 1, Issue 1
Welcome to ‘What’s Happening’ volume 1, and thank you for being an important part of the Global Genes Project. As you may know, the Global Genes Project began as an idea shared by numerous rare disease parents and advocacy groups, whose vision became real when Charleston|Orwig brought their creative expertise to the cause. In January 2010, the campaign was launched and in 4 short weeks over 150 organizations jumped in to become part of this grassroots campaign. Shortly thereafter, the slogan ‘hope. it’s in your genes’ was translated into over 20 languages based on feedback and requests from all of you! Very exciting!
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Hello Global Genes Project™ Partners and Supporters
DANA POINT, CA, April 27, 2010
We are happy to report that we had an incredibly successful launch at the start of the year, with over 150 organizations joining the cause and ‘jeans events’ taking place all around the globe, many in support of World Rare Disease Day at the end of February. It was compelling to see our community come together, breaking down silos and barriers and working towards a common goal.
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250 Million People Worldwide Estimated to Suffer From Rare Disease
DANA POINT, CA, March 8, 2010
The Global Genes Project, a worldwide rare disease awareness initiative, today announced the success from its World Rare Disease Day 2010 efforts and laid out plans for future rare disease awareness campaigns.
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Rare Disease Advocates Unite to Translate Slogan of Global Genes Project
DANA POINT, CA, February 25, 2010
The Global Genes Project, today announced that its rare disease campaign slogan, "Hope – It's In Our Genes™," has been translated into multiple international languages and Braille by rare disease patient advocates and supporters from around the world.
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reco® jeans Supports Children With Rare Diseases
NEW YORK - February 23, 2010
reco® jeans (www.recojeans.com), the leading manufacturer of true recycled denim jeans, today announced the company will create a special denim ribbon in support of the Global Genes Project.
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Global Genes Project Launches to Raise Awareness for Millions of Children Living With Rare Disease
DANA POINT, CA – February 1, 2010
Hope – It’s In Our Genes.™ The Children’s Rare Disease Network (www.crdnetwork.org) today announced the Global Genes Project, a new campaign designed to raise awareness about the prevalence of rare diseases that afflict millions of children worldwide.
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