Global Genes Project Building International Network of Rare Disease Advocates Committed to Bringing Rare Disease into the Forefront Year-Round
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 - http://tinyurl.com/Global-Genes-Project-Facebook
- 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: http://tinyurl.com/rarediseasedaypic
- The Global Genes Project slogan, "Hope – It's In Our Genes," was translated into several languages and Braille - http://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 - http://tinyurl.com/Billy-Calhoun
- 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 - http://tinyurl.com/Great-Lakes-Power-League
- 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