The National Organisation for Rare Disorders has announced the addition of ten new rare disease registries. For more detailed information about this news, you can view NORD’s source press release by clicking here.
About the National Organisation for Rare Disorders (NORD)
NORD is an independent non-profit organisation that works to represent and support Americans with rare diseases. The organisation began with a small group of patient advocates who were working to support the passing of the Orphan Drug Act in 1983. Since then, NORD has grown and now works to support patient advocacy, to educate people and provide resources on rare diseases, to support research, and to assist patients, amongst other activities.
NORD Rare Disease Registries
NORD created the IAMRARETM registry to address the particular needs of researchers working on treatments for the rare community. Researchers may face challenges when investigating drugs for the rare disease community, such as small patient populations, a poor understanding of the disease’s course without interventions, and enrolment and retention challenges, amongst others.
To support research into treatments for rare diseases, NORD created the IAMRARE registry, which can collect high-quality data on patient experiences and outcomes using the web. This information can then be used to help inform diagnostics, standards of care, the natural progression of the disease, treatment protocols, and clinical trials. Recently, a multi-year grant award from the biotechnology company Shire has made it possible for NORD to add ten new rare disease registries.