Press Releases Archives - Page 3 of 34 - NORD (National Organization for Rare Disorders)

February 28, 2022

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

Tags: Rare Disease Day, NORD, RDD, rare disease, #LightUpForRare, Sponsor, Light Up for Rare, disease

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

Tags: NORD, newborn screening, Policy, State Report Card, Prescription drug out-of-pocket cost protections, telehealth, RDAC, state government, state, Report Card, Medicaid eligibility, 50 states, United States, regulatory affairs, government

February 17, 2022

TOPIC: Press Releases, Get Involved, Rare Disease Day

Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2022

Posted at February 2, 2022 08:36 am by Rohan Narayanan

Organizations and individuals from across the country are partnering with NORD to help make a difference for rare disease patients and families on Rare Disease Day 2022

February 17, 2022, Washington, DC – Leading up to Rare Disease Day on Monday, February 28, the National Organization for Rare Disorders (NORD) is highlighting the partners and supporters of this incredible international… Read More

Tags: Rare Disease Day, NORD, RDD, CMTC-OVM, The Balancing Act, Behind the Mystery, Partner, MdDS Foundation, Rare Revolution Magazine, Danny's Dose, HPS Group, American Behcet's Disease Association, Adam Rose

February 15, 2022

TOPIC: Press Releases, Advocacy

NORD Applauds Confirmation of Robert Califf as Commissioner of the Food and Drug Administration

Posted at February 2, 2022 01:31 pm by Rohan Narayanan

Rare disease community eager to continue important partnership with FDA

February 15, Washington, DC – Today, the National Organization for Rare Disorders (NORD) President and CEO Peter Saltonstall issued the following statement following the confirmation of Robert Califf as Commissioner of the Food and Drug Administration (FDA):

Tags: FDA, Senate, Robert Califf, Food and Drug Administration, Commissioner

January 20, 2022

TOPIC: Press Releases, RareLaunch

NORD’s RareLaunch Program Announces Expanded Course Learning to Help Launch and Grow Rare Disease Nonprofits

Posted at January 1, 2022 09:05 am by Rohan Narayanan

RareLaunch provides critical hands-on learning and support to build capacity for rare disease-focused organizations

January 20, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced enhanced learning and updated courses now available through its innovative RareLaunch® program. Throughout its long history, NORD has been committed to supporting patients and families looking to start nonprofits and… Read More

Tags: NORD, research, Education, Chan Zuckerberg Initiative, RareLaunch, Forming a Foundation, Research Ready, Nonprofit, Learning