Published August 25, 2025 by NORD
“From Records to Research” empowers patients, caregivers to take control of their health The National Organization for Rare Disorders (NORD®), the leading national nonprofit serving more than 30 million Americans …
Continue reading “NORD Unveils New, Free Data Literacy Course”
Read morePublished July 7, 2022 by NORD
Explore the five steps in drug development and discover new opportunities to get involved More than 95% of rare disease patients lack an FDA-approved treatment for their condition. However, today …
Continue reading “A Conversation on Drug Development for Rare Diseases”
Read morePublished December 17, 2021 by NORD
NORD, in partnership with the Critical Path Institute (C-Path) is proud to announce a two-part video series on patient-focused drug development (PFDD) as part of our Rare Disease Cures Accelerator-Data …
Continue reading “The Importance of Patient Voices and Data Analytics”
Read morePublished October 5, 2021 by NORD
This Request for Proposal (RFP) is for the creation of a logo and branding guidelines for the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®), a project led by Critical …
Read morePublished September 15, 2021 by NORD
TUCSON, Ariz. and WASHINGTON, September 15, 2021 — The Rare Disease Cures Accelerator-Data and Analytics Platform initiative (RDCA-DAP®) officially launched its next phase on Tuesday establishing itself as the leading platform to …
Continue reading “Rare Disease Innovation and Data Sharing Accelerated by New RDCA-DAP Program”
Read morePublished December 16, 2020 by NORD
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 …
Read morePublished December 9, 2020 by NORD
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 …
Read morePublished December 3, 2020 by NORD
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 …
Read morePublished November 11, 2020 by NORD
There are five steps in the drug development process, which are designed to help ensure that potential new therapies are both safe and effective. Developing medical products for rare diseases encounters …
Read morePublished October 21, 2020 by NORD
TUCSON, Ariz. and WASHINGTON, D.C. October 21, 2020 — The Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD®) hosted the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) 2020 …
Continue reading “RDCA-DAP First Year Milestones Highlighted at Virtual Workshop”
Read more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.