Press Releases Archives - NORD (National Organization for Rare Disorders)

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 Laura Mullen

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 mission to generate evidence and data to advanceRead More

Tags: NORD, National Organization for Rare Disorders, Vanessa Boulanger, RareInsights, National Commission on Orphan Diseases, Director of Research, Barriers to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative Analysis

November 18, 2020

TOPIC: Press Releases, Featured News, Advocacy, RDACs

NORD Launches Project RDAC, Announces Inaugural Meeting on December 16

Posted at November 11, 2020 09:15 am by Laura Mullen

Washington, DC, November 18, 2020—With a mission of empowering and equipping the rare disease community to effectively engage decision-makers within their state governments, the National Organization for Rare Disorders (NORD®) has launched an initiative that will assist in building well-organized, high-functioning Rare Disease Advisory Councils (RDACs)… Read More

Tags: Rare Disease Advisory Council, Rachel Sher, Horizon Therapeutics, RDAC, Vice President, Policy and Regulatory Affairs for NORD

November 10, 2020

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

NORD Drives Rare Disease Progress Through Patient-Powered Data With IAMRARE™ Registry Members

Posted at November 11, 2020 09:48 am by Laura Mullen

Washington, DC, November 10, 2020—This year, in conjunction with its rare disease community partners, the National Organization for Rare Disorders (NORD®) continued to drive research and innovation through the IAMRARE™ registry program. Having launched its first study in 2014, today IAMRARE supports longitudinal data collection efforts for over 40 rare… Read More

Tags: NORD, Rare Diseases and Orphan Products Breakthrough Summit, metachromatic leukodystrophy, Vanessa Boulanger, IAMRARE, Inc., Aplastic Anemia and MDS International Foundation, Stephen Hahn, KrabbeConnect, Appendix Cancer/Pseudomyxoma Peritonei Research Foundation, A Cure in Sight, necrotizing enterocolitis, US Food and Drug Administration Commissioner, Gorlin Syndrome Alliance, The Moebius Syndrome Foundation, Tatton Brown Rahman Syndrome Community, COPA Syndrome Foundation, Helping Hands for GAND, Sara's Cure, The Snow Foundation, The Association for Creatine Deficiencies, The Cute Syndrome Foundation, undiagnosed patients, arachnoiditis, moyamoya

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, 2020—As 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

Tags: National Institutes of Health, Pamela Gavin, National Center for Advancing Translational Sciences, Chan Zuckerberg Initiative, Silicon Valley Community Foundation, RareLaunch, Forming a Foundation, Research Ready, Dr. Christopher Austin, 501(c)(3)

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

Tags: NORD, Peter L. Saltonstall, FDA, National Organization for Rare Disorders, Vanessa Boulanger, Inc., US Food and Drug Administration, Rare Disease Cures Accelerator Data and Analytics Platform, RDCA-DAP, Theresa Mullin, Critical Path Institute, Billy Dunn, Jane Larkindale, Michelle Campbell, Associate Director for Strategic Initiatives, Center for Drug Evaluation and Research (CDER), Klaus Romero, Otsuka America Pharmaceutical, Pravin Jadhav, Ph.D., M.S.c.

1
2
3
…
25
Next >