Millions of Children in America Suffer From Roughly 7,000 Unique Rare Diseases, Most of Which Lack Adequate Research Tools and Funding
DANA POINT, Calif. & SALT LAKE CITY–(BUSINESS WIRE)–In the spirit of Rare Disease Day on Feb. 28th, the Children’s Rare Disease Network (www.crdnetwork.org) has received a donation from RemedyMD® (www.remedymd.com) of its RegistryOnDemand™ product specifically created for rare disease research organizations, and in turn the CRDN is announcing plans to give this research registry tool away via contest to one lucky winner in the rare disease community. This 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.
This is in addition to a number of campaigns the CRDN is spearheading including The Global Genes Project (www.globalgenesproject.org) to drive awareness for the unmet medical needs of the global rare disease community.
Details will be announced in the coming weeks about the contest, expected to involve one- to two-minute video entries to be submitted by friends, families, disease sufferers, researchers or their respective disease organizations’ staff members stating why they should be chosen as the winner.
“We think the contest format 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, Children’s Rare Disease Network and the Global Genes 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.”
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 birthdays.
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: www.RemedyMD.com.
About The Global Genes Project
The Global Genes Project is a campaign of the RARE Project, and is a grassroots effort with the goal to increase awareness about the prevalence and lack of treatments for rare diseases worldwide. The RARE Project is a registered 501c3 non-profit organization. For more information visit https://www.rareproject.org or https://www.globalgenesproject.org.
Don Holm, 801-733-3373