PRESS
Help Children With Rare Diseases Get the New Medicines They Need
July 5, 2011
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
7,000 Bracelets for Hope™ Campaign Raises Awareness For Over 7000 Rare Diseases
February 08, 2011
Global Genes Project Announces "Wear That You Care!" Denim Awareness Camaign for Rare Disease Day 2011
January 26, 2011
Thumbelina Kids: Tiny as Dolls, They Strive to Fit In
January 18, 2011
2010 ROCK STARS OF SCIENCE!" DR. EMIL KAKKIS HONORED AS A 2010 ROCK STAR OF SCIENCE
November 17, 2010
7,000 Bracelets For Hope - A Rare Disease Awareness Campaign
November 1, 2010
Global Genes Quarterly Conference Call Overview
October 28, 2010
Seeking A Cure For Jonah
October 19, 2010
The Global Genes Project Charity Benefit and Fashion Week Kick Off!
September 7, 2010
Advocates to bring rare disease philanthropy under one umbrella
August 9, 2010
Big pharma moves from 'blockbusters' to 'niche busters'
August 9, 2010
Pfizer's Viagra Faces FDA Review for Use in Children With Lung Condition
July 27, 2010
NIH Takes On New Role in Fight Against Rare Diseases
July 24, 2010
NORD Testifies Before Senate HELP Committee
July 21, 2010
A Great Win for Rare Diseases in U.S. Senate Appropriation Bill
July 15, 2010
Regulatory Flexibility
July 02, 2010
Children's Rare Disease Network Partners With Medpedia.com To Create Rarespace
June 29, 2010
FDA Database Aims to Spark Orphan-Disease Drug Development
June 18, 2010
EXCLUSIVE: Pfizer plans to move fast on rare disease pacts
June 17, 2010
Good news for rare disease?
June 15, 2010
THE CHILDREN'S RARE DISEASE NETWORK LAUNCHES VALUABLE INFORMATIONAL BLOG
June 9, 2010
FDA Grants Orphan Drug Status For Cyclodextrin Compound To Treat Fatal Genetic Cholesterol Disease
May 17, 2010
Genetic Sequencing Kit Catches Rare Mutation for TARP Syndrome
May 15, 2010
Parents of child with rare illness aim to help
April 26, 2010
AltheaDx and The Nicholas Conor Institute for Pediatric Cancer Research Announce Molecular Diagnostics Collaboration to Improve the Diagnosis and Treatment of Childhood Cancer
April 19, 2010
Cooking with the Genzyme Recipe: New Players Funding Rare Disease Drugs in Boston
April 12, 2010
PhRMA Honors Patient Advocates Ron and Raychel Bartek
March 18, 2010
A Legacy For and Beyond Batten Disease
March 16, 2010
Study opens new avenue for developing treatments for genetic muscle-wasting disease
March 15, 2010
Novato's BioMarin finds niche and growing quickly
March 13, 2010
First whole genome sequencing of family of 4 reveals new genetic power
March 10, 2010
Push to Cure Rare Diseases
March 10, 2010
NIH-Funded Research Study
March 8, 2010
250 Million People Worldwide Estimated to Suffer From Rare Disease
March 8, 2010
GENE THERAPY REVERSES EFFECTS OF LETHAL CHILDHOOD MUSCLE DISORDER IN MICE
February 28, 2010
CHI SUPPORTS RESEARCH AND HOPE FOR PATIENTS OF RARE DISEASES
February 25, 2010
RARE DISEASE ADVOCATES UNITE TO TRANSLATE SLOGAN OF GLOBAL GENES PROJECT IN TIME FOR WORLD RARE DISEASE DAY!
February 25, 2010
reco® jeans SUPPORTS CHILDREN WITH RARE DISEASES
February 23, 2010
MILLIONS AROUND WORLD TO OBSERVE RARE DISEASE DAY ON SUNDAY
February 23, 2010
GLOBAL GENES PROJECT TO RAISE AWARENESS FOR MILLIONS OF CHILDREN LIVING WITH RARE DISEASE
February 1, 2010
GALAPAGOS TO FOCUS ON RARE DISEASES IN STRATEGIC SHIFT
January 26, 2010
THE PATIENT ASCENDANT
January 18, 2010
FUTURE OF NEWBORN SCREENING ENVISIONED: PROCEEDINGS NOW VIEWABLE ONLINE
January 7, 2010
HUNTING NEWBORN TESTS FOR SUPER-RARE GENE DISEASES
January 5, 2010
THE LONELINESS OF FIGHTING A RARE CANCER
January 5, 2010
DONATE GAMES CHARITY CONNECTS COMMUNITIES WORLDWIDE
December 21, 2009
DONATEGAMES TURNS USED VIDEO-GAMES INTO FUNDING FOR MEDICAL RESEARCH TO HELP KIDS
November 25, 2009
CHILDREN'S RARE DISEASE NETWORK RECEIVES LIFE TECHNOLOGIES FOUNDATION GRANT
November 17, 2009
BABY Z CURED OR RARE DISEASE IN 3 DAYS
November 11, 2009
SOCIAL NETWORKING SAVIORS: TWITTER, FACEBOOK USED IN EFFORT TO HELP SAVE A BABY'S LIFE
October 29, 2009
U.S. AND EUROPEAN RARE DISEASE ORGANIZATIONS SIGN STRATEGIC ALLIANCE
October 28, 2009
RARE DISEASE CENTER HOSTS SYMPOSIUM ON NEW STRATEGIES
October 27, 2009
RARE FIND
October 23, 2009
NEW FDA GROUPS FOR RARE, NEGLECTED DISEASES COULD SPEED PATH TO MARKET
October 12, 2009
ARNOLD NATIVE TO RUN ACROSS SAHARA DESERT
August 18, 2009
CAMP SUNDOWN SHINES IN THE BRONX
August 13, 2009
RESEARCHERS IDENTIFY NEW FUNCTION FOR PROTEIN MISSING IN DUCHENNE MUSCULAR DYSTROPHY
August 4, 2009
AMERICANS STRUGGLE TO PAY FOR HEALTHCARE: STUDY
June 22, 2009
DEAL REACHED TO CUT DRUG COSTS
June 20, 2009
ONE GIRL'S HOPE, A NATION'S DILEMMA
June 14, 2009
IN RARE DISEASE, A FAMILIAR PROTEIN DISRUPTS GENE FUNCTION
May 26, 2009
NEW INSTITUTE WILL STUDY RARE DISEASE
May 20, 2009
UNC-DUKE STUDY: IMPAIRED BRAIN PLASTICITY LINKED TO ANGELMAN SYNDROME LEARNING DEFICITS
May 10, 2009
TO MAKE PROGRESS IN RARE CANCERS, PATIENTS MUST LEAD THE WAY
May 9, 2009
MO. VOTES TO ADD 5 DISEASES TO NEWBORN SCREENINGS
May 9, 2009
SIGNATURE GENOMIC LABORATORIES DETECTS CHROMOSOME ABNORMALITIES IN INDIVIDUALS WITH PALLISTER-KILLIAN SYNDROME WITHOUT INVASIVE SKIN BIOPSY
May 7, 2009
MIRACLE FOR MATTHEW
May 5, 2009
SHRINKING BABY MAGGIE AGNEW BAFFLES DOCTORS
May 4, 2009
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
DANA POINT, Calif. – February 08, 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.
The 7000 Bracelets for Hope™ campaign is designed around the color blue and a denim jeans theme, which has become the unifying symbol of hope for all those who have been touched by rare diseases. Since October 2010, numerous companies, jewelry designers, artists, crafters, church groups and other volunteers have been working tirelessly to produce unique blue bracelets to be distributed to children suffering from rare diseases and their parents leading up to Rare Disease Day 2011.
"We are grateful to all of our 7,000 Bracelets for Hope™ participants who have donated materials and bracelets and who are joining the global movement to advance the fight against rare diseases and disorders,” said Nicole Boice, Founder, Global Genes Project. “The blue bracelet designs we have received for children and parents are remarkable and each one represents the uniqueness of one of the 7,000 rare diseases.”
“The Global Genes Project shines a light where one is sorely needed, providing children with rare diseases and their families badly needed connections, support, awareness and hope for the future," said Amanda Royce-Hale, Royzle Designs. “I am honored to contribute to this worthwhile cause and work to help the entire rare disease community.”
Drug Crisis: 95% of Rare Diseases Have No FDA Approved Treatments According to statistics from the National Institutes of Health (NIH), there are approximately 7,000 different rare diseases that together affect over 25 million Americans and an estimated 250 million people globally.
It is also estimated that 80% of rare diseases are caused by genetic 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.
“We are honored to have an opportunity to help support the 7,000 Bracelets for Hope™ campaign,” said Whitney Taylor, Happy Mango Beads. “Rare diseases and disorders leave millions of children and families without hope for treatments and by supporting this project we intend to do our part to raise global awareness and show the rare disease community how much we care.”
"There is nothing more amazing to me as an artist than the power of creativity to uplift, enlighten and illuminate,” said Margot Potter, author, designer and The Creative and Education Coordinator for Jewelry Television's Jewel School. “I'm a big believer in small kindnesses having great impact. I am honored to support this cause."
7,000 Bracelets for Hope™ Participants Some of the participating companies, organizations and individual jewelry designers contributing to the 7,000 Bracelets for Hope™ awareness campaign include: Adorned, Allen Girl Designs, Alyson Garvey Jewelry Designs, Amber Woodward, Amy Giesen, Anne Manninen, BBBDesigns, BeadsKnitsAndBits, Bee's Baubles, Believe In Abilities, Brea McClain, BuzzyBizzyBeads, Carol Hudgions, Cheers To July, Chevin Terrado Designs, LLC., Crafty Jewelry, demoiselle 16, Delta Xi Chapter of Phi Sigma Sigma sorority at Binghamton University, Designs by Stevie J, EC Jewelry Design, Etsy, Fat Dog Beads, Gabrielle's Gift Inc., Gamut, Glassbaker Inc, GottaSpoilem Gems, GypsyChique, HandHeadHeart, Happy Mango Beads, Irene Celori, Jamie Barlow, Janet's Gems, Jewelry by Jennifer Pride, Jewelry by Sosalyn, Jewelry Creations by Lizardpoint, Jewelry Link Gemstones, Kaplow, KAT Creations, KatieDot Designs, Kim Wilson, Kimmykin's Boutique, KraftD, Kreations by Karlee, Lacey Ryan, Inc., Lana Chayka Designs, Lynn Warner, Made by Susan, Mami's Gem Studio, Melissa Mansfield, Memory Maker Bracelet, Murphy Originals, LLC., My Leilani Designs, Native Spirit Jewelry, Original Designs for You, Patty Haas, Peace of Mind Handcrafted Jewelry, Peace Unique, Perfect Accents by Lori, Petals N' Things, PG's Gemspiration, Pickled Beads Jewelry, The Purple Lady, Rhea's Renderings, Royzle Designes, Rozeza's Creations, Sedgeworks, Serenity's Jewelry and Gems, Spider Baby Danger Kitten, Sylvia May Forrest, Three Fates Design, Timex, Treasure4Ever, Wendy Liu, WhatKnotShop and Wild Shimmer Designs.
“We donated our beads with the utmost love and admiration to the children and families affected by truly devastating rare diseases,” said Justin Bentley, Glassbaker, Inc. “We sincerely hope that our beads and the unique bracelets created from them will bring all those afflicted with rare diseases that extra bit of hope and courage they need to continue fighting.”
“Our efforts to raise awareness through the 7,000 Bracelets for Hope™ are just beginning and we will continue building this awareness program throughout 2011,” said Elizabeth Joshi, a Global Genes Project volunteer whose son suffers from Joubert Syndrome, a rare genetic disorder characterized by a defect to the brain's cerebellum. “Although rare conditions individually may each affect a relatively small percentage of people, collectively they represent millions of individuals. We are 7,000 different rare diseases but we are all fighting for each other.”
Joining the Rare Disease MovementThe Global Genes Project website provides detailed information related to submitting and receiving 7,000 Bracelets for Hope™ designs. Individuals and companies interested in participating by donating bracelets to the bracelet 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 companies and volunteers.
About The Global Genes Project The Global Genes Project, is a leading nonprofit rare disease advocacy organization that educates the public about the prevalence of rare diseases worldwide. The organization is responsible for launching the Denim Jeans Awareness Ribbon™, Wear That You Care™ denim campaign and the 7,000 Bracelets for Hope™ campaign to call attention to the global drug development crisis facing millions of people afflicted with rare diseases. To see the full list of Global Genes Project supporters, visit here >>.
Contact:
Jacqueline Tanzella
Spark Public Relations
jacqueline@sparkpr.com
415-321-1889
Nicole Boice
Global Genes Project
949.248.RARE (7273)
949.680.7088 (cell)
nicoleb@rareproject.org
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