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January 26, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Research, COVID-19

NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines

Posted at January 1, 2021 11:00 am by Valaree DonFrancesco

Washington, DC, January 262021In an effort to provide clear, usefulauthoritative information to rare disease patients and caregivers on the COVID-19 vaccineson January 15 the National Organization for Rare Disorders (NORD®), along with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, hosted a special… 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 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 Valaree DonFrancesco

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

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 Valaree DonFrancesco

Washington, DC, November 10, 2020This 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 programHaving launched its first study in 2014, today IAMRARE supports longitudinal data collection efforts for over 40 rare… Read More

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 Valaree DonFrancesco

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