September 13, 2011 05:08 ET

Contest Ends Sept. 30th for RemedyMD and the Children's Rare Disease Network to Give Away a Free Rare Disease Research Registry Valued up to $50,000

Entrants Have Less Than 3 Weeks Left to Submit Video Clips Telling Their Unique Stories in Exchange for Chance to Win Leading Life Sciences Research Software

DANA POINT, CA and SALT LAKE CITY, UT--(Marketwire - Sep 13, 2011) - In the spirit of Rare Disease Day on Feb. 28th, the Children's Rare Disease Network ( received a donation from RemedyMD® ( of its RegistryOnDemand™ product specifically created for rare disease research organizations. Then on June 26th the CRDN announced a contest to give this research registry tool away to one lucky winner in the rare disease community.

RemedyMD's 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. The company also just announced its software will be implemented at 10 NCI (National Cancer Institute) laboratories as part of SAIC-Frederick's Advanced Technology Program.

Existing contest entries can be viewed at including those for Nephrotic Syndrome and FSGS, Prader-Willi Syndrome, Marshall-Smith Syndrome, and Intracranial Hypertension.

To enter, individuals must create a video 5-10 minutes in length creatively telling why his or her disease and video should be selected as the winner. Anyone can enter, and in the event the winner is not directly involved in research, he or she can choose which disease association or research entity to receive the software. RemedyMD will then work with researchers to configure its Mosaic™ registry software towards that particular rare disease. The winner will be announced at the rare disease webinar from RemedyMD on Oct. 12th. To register for this webinar visit

"Using videos for giving away this rare disease registry is a great way to advance our goal of continuing education surrounding rare diseases and to generate the global awareness the rare disease community deserves," said Nicole Boice, founder and president, RARE Project. "Many rare diseases affect small numbers of patients and because of the rarity of each condition, the public is often unaware of these chronic and life threatening conditions or healthcare IT software that is likely to accelerate that research. These videos illustrate that these are real people fighting real challenges."

RemedyMD CEO, Gary D. Kennedy, adds, "We provide research registries to many large institutions across the country, and are aware of the acute lack of funding for the rare disease community. It's why we chose to give this valuable product away to one contest winner, and why we've always had a different pricing model for rare disease researchers. There's no reason to develop this great technology if it's not within reach of those who need it most."

A staggering 250 million people worldwide are estimated to suffer from approximately 7,000 different forms of rare diseases for which there are limited treatment options. In the United States, statistics show that approximately 350 new drugs have been developed for the entire rare disease patient population since the passing of the Orphan Drug Act in 1983 despite incentives put in place by the federal government. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday.

The RARE Project has developed two key rare disease initiatives that include Children's RARE Disease Network ( as well as The Global Genes Project ( to drive awareness for the unmet medical needs of the global rare disease community.

About RemedyMD
RemedyMD's medical registry software leverages health care information technology to create better clinical decision support systems in rare disease research -- whether you need a clinical registry, patient registry software, or a Lab Information Management System. RemedyMD helps researchers aggregate and harmonize data from widely disparate sources and then identify patterns that result in accelerated discoveries. These tools help collect, host, manage, and query data regardless of source; conduct experiments; manage studies and biospecimen; and help researchers build their own registries. For more information visit:

About RARE Project
The RARE Project exists to raise awareness for and educate about rare disease, build an equipped community/constituency and fund innovations that support in-their-lifetime rare disease research. They are accomplishing this through programs and initiatives that include both Children's RARE Disease Network and the Global Genes Project. For more information visit

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