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October 28, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Research, Advocacy, RareLaunch

NORD Announces RareLaunch Workshops to Support Those Seeking to Start Rare Disease Nonprofits or Research Programs 

Posted at October 10, 2020 09:37 am by Laura Mullen

Washington, DC, October 28, 2020As part of its commitment to community engagement and organizational capacity building, the National Organization for Rare Disorders (NORD®) RareLaunch® training program will host two days of free workshops to take place in December, funded in part through a grant from the… Read More

October 21, 2020

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

RDCA-DAP First Year Milestones Highlighted at Virtual Workshop

Posted at October 10, 2020 11:14 am by Laura Mullen

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 Virtual Workshop on Monday, October 19. The platform, funded by a cooperative agreement through the U.S. Food and Drug Administration (FDA), serves as… Read More

October 15, 2020

TOPIC: Featured News, Patients & Members, Advocacy, COVID-19

NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases

Posted at October 10, 2020 06:38 pm by Jennifer Huron

For those in the rare community, one of the few positives that have come from the global COVID-19 pandemic has been the wider availability of telehealth services. Through surveys, virtual discussion groups and direct advocacy efforts, NORD has continued to track rare patients’ and caregivers’ use of and experience with telehealth. The findings from NORD’s work are gathered in… Read More

October 9, 2020

TOPIC: Press Releases, Featured News, Medical, Patients & Members, Research, Advocacy, Industry, Events

NORD Highlights New Era of Innovation and Public Health Awareness in Virtual 2020 Rare Diseases and Orphan Products Breakthrough Summit

Posted at October 10, 2020 10:45 am by Laura Mullen

Washington, DC, October 9, 2020—On October 8 and 9, the National Organization for Rare Disorders (NORD®virtually hosted the 2020 Rare Diseases and Orphan Products Breakthrough Summit, the first time the organization representing over 25 million Americans impacted by rare diseases has presented the conference exclusively… Read More

October 5, 2020

TOPIC: Featured News, Patients & Members, Advocacy, COVID-19

NORD and FDA Co-Host Public Listening Session, Focusing on COVID-19 and Rare Diseases

Posted at October 10, 2020 09:32 am by Laura Mullen

The COVID-19 pandemic has caused great fears around drug shortages, the demand for personal protective equipment (PPE) and the status of clinical trial research for rare diseases. On September 16, NORD heard from our rare disease community and brought their questions directly… Read More