Disease Registry White Paper Library

The new Web site for RemedyMD is live and has some great resources. There is a white paper library full of content about rare, common, patient, and clinical research registries (http://www.remedymd.com/registry-white-papers.php) as well as a podcast library and on-demand webcast library. These resources are all downloadable for free.

RemedyMD Rare Disease "RegistryOnDemand"

According to EURODIS, "The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore without reason to hope."

"The lack of specific health policies and the scarcity of expertise translate into delayed appropriate diagnosis and difficulty of access to care. The national healthcare services for diagnosis, treatment and care of rare disease patients differ significantly in terms of their availability and quality. European citizens have unequal access to healthcare services and to orphan drugs. Research on rare diseases is scarce."

One of the best ways to fight rare diseases, a cause that is so near and dear to the hearts of those affected, is the sharing of data, treatments, outcomes and other research. RemedyMD (www.RemedyMD.com) has decided to help by offering tools for rare disease researchers to create rare disease registries where research information is entered, shared, and analyzed so cures can be found from this collective knowledgebase.

If you have a rare disease story to share please tell us about it here.