Advocacy Archives - Page 2 of 59 - NORD (National Organization for Rare Disorders)

March 11, 2022

FDA’s Accelerated Approval Pathway: A Rare Disease Perspective

Posted at March 3, 2022 01:38 pm by Valaree DonFrancesco

Accelerated approval is critical to providing access to new, safe, and effective drugs to patients with serious and life-threatening diseases and conditions for which there are no meaningful alternatives. Learn more about the history of accelerated approval, how its use has benefited rare disease patients, and recommendations for strengthening the accelerated approval pathway by clicking here.

February 25, 2022

TOPIC: Advocacy

New Senate Bill Would Extend Access to Telehealth After the COVID-19 Public Health Emergency Ends

Posted at February 2, 2022 10:38 am by Jennifer Huron

Send a message to your representatives NOW telling them to support access to vital telehealth services.

Recognizing how important access to telehealth services has been to millions of Americans during the COVID-19 pandemic, a bipartisan group of senators recently introduced a bill… Read More

Tags: omnibus spending bill, Rare Action Network, Omnibus, covid-19, telehealth, Telehealth Extension and Evaluation Act

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 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

February 3, 2022

TOPIC: Patients & Members, Advocacy

NORD Gives Back: Advocacy and Action

Posted at February 2, 2022 09:00 am by Maia Craig

Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum to discuss the importance of rare disease allies… Read More

Tags: rare disease community, advocacy, Rare Disease Advocacy, Living Rare Living Stronger Patient and Family Form, Living Rare, #LivingRareForum, diagnostic odyssey, health equity, NORDGivesBack