Contest Begins June 26th for RemedyMD and the Children’s Rare Disease Network to Give Away a Free Rare Disease Research Registry Valued up to $50,000
Entrants to Submit Brief Video Clips Telling Their Unique Stories in Exchange for Chance to Win Leading Life Sciences Software—Designed to Accelerate the Cure for Their Underfunded Disease DANA POINT, CA/SALT LAKE CITY, UT, June 20 /MarketWire/ –- In the spirit of Rare Disease Day on Feb. 28th, the Children’s Rare Disease Network (www.crdnetwork.org) received [...]
Parent Report from the Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data Conference
Last week I spent 3 days in Bethesda, Maryland attending a registry “boot camp” with Genetic Alliance and a rare diseases registry conference hosted by the NIH Office of Rare Diseases Research. From what I gathered, a “registry” for rare diseases can mean a simple contact list, a collection of clinical information input by patient [...]