Written by Laura Mullen on December 16, 2020
The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative will allow patient organizations to leverage the data they have collected to accelerate understanding of disease progression, clinical outcome measures and biomarkers for rare diseases. It will increase the efficiency of data analysis, and hopefully… Read More
Written by Laura Mullen on December 9, 2020
Natural history studies provide health care professionals and researchers with first-hand information about people living with rare diseases and give insight into how rare diseases present, progress over time and impact patients. Data sharing supports patients by helping the community understand their disease better, which helps… Read More
Written by Laura Mullen on December 3, 2020
As the primary benefactors of drugs that treat rare diseases, patients and caregivers must play a role in the drug development process. Patients and caregivers bring a human perspective to the drug development process and can guide researchers toward beneficial treatment outcomes. Hear from Davelyn… Read More
Written by Laura Mullen on November 20, 2020
On 11.19.20 in an article entitled “Ways to Make Your Donated Money and Goods Go Further,” Connecticut magazine included NORD in their list of ten Connecticut-based nonprofits that have each earned four stars from charity-assessment monitor Charity Navigator.
#NORDintheNews
Written by Laura Mullen on November 19, 2020
Washington, DC—November 19, 2020: Today, the National Organization for Rare Disorders (NORD®) published a comprehensive report through its RareInsights™ initiative: Barriers to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative Analysis. As part of an ongoing missionRead More
