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April 8, 2022

TOPIC: Press Releases, Patients & Members, Advocacy

ICYMI: Rare Disease Community Takes Action to Strengthen and Reform Accelerated Approval 

Posted at April 4, 2022 09:15 am by Rohan Narayanan

90 Patient Organizations Sign-on to NORD Letters to Secretary Becerra and Congressional Leaders on Strengthening the Accelerated Approval Pathway 

April 8, 2022, Washington, DC – This week, the National Organization for Rare Disorders (NORD), along with 90 other patient organizations sent letters to Health and Human Services (HHS) Secretary Xavier Becerra andRead More

March 15, 2022

TOPIC: Press Releases

Honoring the Rock Stars of the Rare Disease Community: NORD Announces the 2022 Rare Impact Award Honorees

Posted at March 3, 2022 08:14 am by Rohan Narayanan

NORD’s Rare Impact Award ceremony on June 26 will honor all those making strides to improve the lives of patients and families in the rare disease community 

Cleveland, OH, March 15, 2022—Today, the National Organization for Rare Disorders (NORD®) announced the 2022 Rare Impact Award honorees. This list of outstanding individuals, organizations and industry innovators will… Read More

March 3, 2022

TOPIC: Press Releases

Navigating Diversity, Equity and Inclusion in Rare Disease Nonprofits

Posted at March 3, 2022 11:05 am by Rohan Narayanan

NORD Releases New Toolkit to Inform and Guide Patient Advocacy Groups to Improve and Prioritize Equity and Accessibility in the Rare Disease Community 

Washington, DC, March 3, 2022— Today, the National Organization for Rare… Read More

February 28, 2022

TOPIC: Press Releases, Rare Disease Day

The Most Important Holiday Most Don’t Know: Celebrating Rare Disease Day

Posted at February 2, 2022 08:27 am by Rohan Narayanan

NORD, the official US sponsor of Rare Disease Day, is a leading voice raising awareness among the public and decision-makers about the challenges faced by the rare disease community

February 28, 2022, Washington, DC – Today is Rare Disease Day, a global celebration to raise awareness among the public and decision-makers about the challenges faced by the over 25 million… Read More

February 22, 2022

TOPIC: Press Releases, Advocacy, State Report Card

A Rare Report Card: NORD Grades All 50 States on Rare Disease Policy Issues

Posted at February 2, 2022 08:00 am by Rohan Narayanan

NORD’s State Report Card Provides Critical Analysis Across Nine Policy Areas, Including Telehealth, Drug Costs, Medicaid Eligibility, and More

February 22, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) published the latest edition of its annual State Report Card, which rates all 50 states and Washington, DC on the most important issues affecting the more than… Read More