Scroll
To Top

December 16, 2020

TOPIC: Featured News, Patients & Members, Research, Advocacy, RDCA-DAP

In Final Installment of Video Series, Patient Advocacy Group Leaders Share Thoughts on the Importance of Participation in RDCA-DAP

Posted at December 12, 2020 08:31 am by Valaree DonFrancesco

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 expedite treatments for rare diseases individually and for Read More

December 9, 2020

TOPIC: Featured News, Patients & Members, Research, Advocacy, RDCA-DAP

Patient Advocacy Group Leaders Tell How Data Sharing Can Help with Understanding Rare Diseases in New Video

Posted at December 12, 2020 08:44 am by Valaree DonFrancesco

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 improve clinical care and can accelerate the development of… Read More

December 3, 2020

TOPIC: Featured News, Patients & Members, Research, Advocacy, RDCA-DAP

New Video Series Featuring Patient Advocacy Group Leaders, “The Importance of Patient-Reported Data to Progress in Rare Disease,” Launched by NORD, C-Path

Posted at December 12, 2020 10:46 am by Valaree DonFrancesco

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 Hood (Board President, Congenital Hyperinsulinism International and PI, CHI… Read More

November 19, 2020

TOPIC: Press Releases, Featured News, Research

NORD Releases Report on the State of Rare Disease Diagnosis, Care and Treatment in America Over Three Decades

Posted at November 11, 2020 09:13 am by Valaree DonFrancesco

Washington, DC—November 19, 2020: Today, the National Organization for Rare Disorders (NORD®) published comprehensive report through its RareInsights™ initiative: Barriers to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative AnalysisAs part of an ongoing mission to generate evidence and data to advanceRead More

November 11, 2020

TOPIC: Featured News, Patients & Members, Research, RDCA-DAP

NORD & C-Path Present 3-Part Video Series on Challenges of Rare Disease Drug Development, How RDCA-DAP Can Help

Posted at November 11, 2020 09:15 am by Valaree DonFrancesco

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 many challenges throughout this process. The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) is being developed by NORD and the Critical Path Institute (C-Path) to help overcome these… Read More