PRESS

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

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

250 Million People Worldwide Estimated to Suffer From Rare Disease

Global Genes Project Building International Network of Rare Disease Advocates Committed to Bringing Rare Disease into the Forefront Year-Round

DANA POINT, Calif., March 8 /PRNewswire-USNewswire/ -- The Global Genes Project (www.globalgenesproject.org), 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.

"Thanks to the participation of thousands of people around the globe who joined this effort leading up to World Rare Disease Day, the launch of the 'blue ribbon and denim jeans' campaign met with tremendous success," said Nicole Boice, founder and CEO of the Global Genes Project. "In fact, we exceeded our expectations! But our efforts have only begun, as patients and families endure fighting rare disease year-round, we too must fight daily to heighten awareness of these conditions and the need for increased research funding for effective treatments."

Across the United States, 1 in 10 Americans suffer from rare disease while statistics in the European Union and Canada mirror those from the United States. In total, over 60 million people in North America and the EU suffer from rare disease.

According to the National Institutes of Health (NIH) there are nearly 7,000 rare diseases while Shire, a global specialty biopharmaceutical company, estimates that rare disease affects nearly 250 million people worldwide. A significant portion of rare diseases are genetic in origin and afflict children.

"The number of people globally affected by rare disease is astonishing and yet the general public knows very little about the collection of rare diseases that impact millions," added Boice. "Many rare diseases strike kids and as a result these chronic and life-threatening conditions create an immense burden on caregivers as well as the education and healthcare systems. Rare diseases are having a profound effect on the global economy."

As part of the Global Genes Project awareness effort, advocates and supporters from different rare disease groups around the world joined together to support a common cause. Since the campaign launched in January, rare disease advocates have brought this global public health crisis into focus. Following are a few of the recent highlights:  

Broad exposure and outreach:

  • 150+ corporations, organization, medical research institutions, hospitals and foundations signed up to support the Global Genes Project
  • A 'Blog For Rare' campaign was initiated with over 50 global bloggers, all participating the week before World Rare Disease Day
  • A Twitter 'Care about Rare' chat was organized by parent advocates
  • The Global Genes Project Facebook community was created and numerous parent advocates, foundations and other supporters shared ideas and information about rare disease initiatives
  • The Canadian Organization for Rare Disorders (CORD), Canada's national network for organizations representing all those with rare disorders, introduced the Global Genes Project at a parliamentary movie screening of Extraordinary Measures in Ottawa.  The event had an attendance of about 100 parliamentarians and their staff
  • In Argentina, a Niemann Pick rare disease team organized an large awareness rally and distributed blue ribbons
  • In the UK, the student body at Harlaxton Manor College wore jeans for World Rare Disease Day and hundreds of students assembled to be photographed for the event: See photo >>
  • The Global Genes Project slogan, "Hope – It's In Our Genes," was translated into several languages and Braille - www.globalgenesproject.org/downloads.php

'Kids Helping Kids' support efforts:

  • Numerous children suffering from various forms of rare disease and their siblings participated in making the first-ever denim jeans awareness ribbons. Glue Dots International supplied GlueDots™ adhesives to help make ribbon making fast and easy for kids - See photo >>
  • Three Southern California schools developed a 'game drive' with proceeds benefitting Donategames.org and all participants in the drive wore jeans in support of the Global Genes Project
  • Two teams from Milwaukee Sting, a Wisconsin volleyball club, wore jeans ribbons on their warm-ups during competition in the Great Lakes Power League in suburban Chicago. Coaches also wore denim ribbons and coached in jeans throughout World Rare Disease Day - See photo >>
  • Children at the Harley School in Rochester, New York, distributed jeans ribbons to their classmates

Early corporate and local business campaign supporters:

  • In Southern Indiana, hundreds of Global Genes Project cut-outs and customized posters and counter-cards were displayed in local coffee shops and businesses. House of Bluez  hosted a 'denim and jeans' party
  • Chicago-based law firm of Brenner, Ford, Monroe & Scott organized a "Wear Your Jeans To Work Day" and raised money to support Joubert Syndrome
  • Glue Dots International hosted a 'Wear Jeans Day' and awareness event throughout their organization the week leading up to World Rare Disease Day 2010
  • Reco jeans, a New York based recycled denim manufacturer, provided denim ribbons to its customers to show support and plans to incorporate a denim ribbon into the company's Spring line
  • Charleston | Orwig, a Wisconsin based integrated marketing and reputation management firm sent out hundreds of jeans ribbons to clients, partners and friends throughout the month of February
  • CPRx, a southern California physical therapy clinic participated by wearing jeans, denim ribbons and promoted the Global Genes Project posters with their customers
  • The congregation at CenterPoint Community Church wore jeans on World Rare Disease Day 2010

Support continues with additional awareness initiatives underway:

  • Life Technologies is raising awareness and funds for five rare disease foundations: 90 locations and 8,000 employees will participate with a 'Wear Jeans Day'
  • The Canadian Organization for Rare Disorders (CORD) will be hosting many events in the next few months, which will include promotion of the Global Genes Project
  • A 'Denim and Diamonds' gala is being planned to benefit  AT Children's Project, benefitting children affected by Ataxia Telangiectasia
  • Advocates wore blue ribbons during PBS interview to show broad support for all rare diseases. Program to air March 26-28, 2010
  • Glue Dots International plans to sponsor and launch a global art contest for rare disease

To join the growing list of supporters or to find out how your organization can participate in the Global Genes Project, please visit us on the Web at: www.globalgenesproject.org or on Facebook.

About The Global Genes Project
The Global Genes Project is a campaign of the Children's Rare Disease Network and is a grassroots effort with the goal to increase awareness about the prevalence of rare diseases worldwide. The Children's Rare Disease Network is a registered 501c3 non profit organization. For more information, visit www.crdnetwork.org.

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The Children's Rare Disease Network is a division of and developed by The R.A.R.E. Project, which exists to promote Rare disease Advocacy, Research & Education.
The R.A.R.E. Project is a non-profit 501(c)(3) corporation.