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February 23, 2021

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

NORD Announces This Year’s Heroes of Rare Disease: The 2021 Rare Impact Award Honorees

Posted at February 2, 2021 10:17 am by Valaree DonFrancesco

Washington, DC, February 23, 2021 — Today the National Organization for Rare Disorders (NORD®) announced this year’s Rare Impact Award honorees. These outstanding individuals, organizations and industry innovators will be honored for their exceptional work benefiting the rare disease community in a virtual event streaming on June 28, 2021 at 7:00pm ET. The Rare Impact Awards program is part… Read More

January 28, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy, Rare Disease Day

How Will You Show Your Stripes in 30 Days? Join NORD in Spreading Awareness for Rare Disease Day®, February 28

Posted at January 1, 2021 12:13 pm by Valaree DonFrancesco

Washington, DC, January 28, 2021 Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely unknown to the general public. RRead More

January 27, 2021

TOPIC: Press Releases, Featured News, Advocacy, State Report Card, Medicaid

NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients

Posted at January 1, 2021 09:25 am by Valaree DonFrancesco

Washington, DC, January 27, 2021Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6th Edition of the State Report Card, the annual report rating each state and Washington, DC on the most important issues directly affecting more than 25 million AmericanRead More

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