“Knowledge is empowering and CheckOrphan is committed to educating the public about rare diseases and instilling confidence among those searching for hope, treatment and cures of rare diseases.”
Santa Cruz, California (PRWEB) February 14, 2012
CheckOrphan is launching today a campaign called LOVE to LUCK for Rare Diseases along with the “I Challenge Rob” contest to increase awareness about the needs of rare diseases and to raise funds for unique programs for the rare disease community. The campaign runs from February 14 until March 17 in honor of - World Rare Disease Day - with the chance for participants to win an Apple iPad 3 and other prizes.
“CheckOrphan is a major news and information source that is dedicated solely to giving all rare diseases and the people and entities that stand behind them a voice and a face,” explains Rob Derham, Founder of CheckOrphan. “In addition, CheckOrphan works on implementing projects that benefit the entire sector and this year we are asking the world to work with us to ensure a healthier future for us all.”
CheckOrphan is planning to launch three unique features this year: a Science Journalism Program, a partnership with the Global Rare Disease Registry and a novel collaboration and networking platform – each designed to overcome barriers that hinder the rare disease community.
LOVE and LUCK for Rare Disease
To assist in the launch of the unique features, CheckOrphan is asking the world to sponsor a rare disease page or to make a donation and become a champion as part of the LOVE and LUCK for Rare Diseases campaign. CheckOrphan’s goal during the campaign is to have each rare disease page sponsored between Valentine’s Day and St. Patrick’s Day. CheckOrphan has close to 7000 rare disease pages and a person, organization or company can sponsor any for one year. Each rare disease has a page filled with clinical descriptions, news, videos, research updates, links, events and additional aggregated information.
“Knowledge is empowering and CheckOrphan is committed to educating the public about rare diseases and instilling confidence among those searching for hope, treatment and cures of rare diseases,” states Kathryn Allan, Head of Media Relations for CheckOrphan. “By communicating and promoting the news, activities and information from patients, organizations, government and companies and adapting to the constant change in needs for rare diseases - CheckOrphan is making a difference.”
“I Challenge Rob”
As part of the campaign, people who care about a worthy cause and would like a chance to win an Apple iPad 3 can motivate their network of friends and family to sponsor a rare disease page or to make a donation in conjunction with the contest “I Challenge Rob”. The challenger who raises the most funds through their network from February 14 until March 17 wins an Apple iPad 3.
All entities can also participate. Below are categories for companies, organizations, and academia. The leading entity from each category will receive its logo with a link to its homepage at the top of every page on CheckOrphan for a month. Any entity that sponsors a rare disease page or becomes a champion and makes a donation is automatically entered into the ‘I Challenge Rob’ contest.
“I Challenge Rob” Categories:
- For Private Individuals – Apple iPad 3
- Celebrity / Politician / Sports Figure / Philanthropist Category
- Company Category – Logo on CheckOrphan for a month
- Organization Category – Logo on CheckOrphan for a month
- Academia Category – Logo on CheckOrphan for a month
“The 'I Challenge Rob' contest is a great way for the world to show their support for rare diseases and invest in a better future through CheckOrphan's planned programs,” explains Derham. “I look forward to everyone joining the fun, especially celebrities and notable figures such as: Oprah Winfrey, T. Denny Sanford and Jesse Dylan, all of whom have been great advocates of rare diseases.”
About Rare Diseases
A disease is designated as rare if it affects fewer than 200,000 people (U.S) or 1 person in 2000 (EU). It is a great challenge to attract the attention of the media and society to the plights of researchers who work to cure, and families who suffer from, the rarest of the rare. But the reality of isolation and neglect quickly sets in with diagnosis. Why?
- There are roughly 7000 rare diseases
- Nearly 1 in 10 people has a rare disease
- About 70% of rare diseases affect infants and children
- In the US and the EU alone, more than 60 million people live with a rare disease
- Diagnosis of a rare disease typically takes 2-3 years, with on average 2 or 3 misdiagnoses along that odyssey.
- Rare diseases are an enormous social and economic challenge for society and they often leave families in financial ruins when they strike
CheckOrphan is a non-profit organization located in Basel, Switzerland and Santa Cruz, California that is dedicated to rare, orphan and neglected diseases. CheckOrphan offers users an interactive and dynamic platform whereby visitors have access to the latest news and information associated with rare diseases. This international platform allows visitors to be updated daily, interact with people with similar rare disease afflictions, or access current research through a collaboration with PubMed. CheckOrphan is committed to providing a credible news and information source for the rare disease community that creates stability and confidence among those searching for hope, treatment and cures for rare diseases.
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