Advocacy Archives - Page 3 of 59 - NORD (National Organization for Rare Disorders)

December 15, 2021

Celebrating Advocacy, Action and a Year of Success Building Rare Disease Advisory Councils

Posted at December 12, 2021 07:56 am by Rohan Narayanan

Seven Rare Disease Advisory Councils Established Since Launch of NORD’s Project RDAC

Washington, DC – December 15, 2021 – In 2015, the first rare disease advisory council was created in North Carolina by patients, caregivers, families, and providers. This year, the National Organization for Rare Disorders (NORD), the leading advocate for the over 25 million Americans living with a rare… Read More

Tags: NORD, rare disease, Peter Saltonstall, New Jersey, Virginia, Rare Disease Advisory Council, RDAC, Florida, Louisiana, Massachusetts, Ohio, South Carolina

November 19, 2021

TOPIC: Press Releases, Advocacy

NORD’s Response to the House Passage of the Build Back Better Act

Posted at November 11, 2021 09:48 am by Rohan Narayanan

Washington, DC, November 19, 2021— Today, the House of Representatives passed H.R. 5376, the Build Back Better Act. In response, the National Organization for Rare Disorders (NORD), which represents the 25-30 million Americans living with a rare disease, released the following statement:

“Although NORD is encouraged by many provisions that will help improve access to and affordability of critical health programs… Read More

Tags: Congress, Orphan Drug Act, orphan drug tax credit, Senate, House, drug pricing, Build Back Better Act, BBB, BBBA

November 18, 2021

TOPIC: Advocacy, Get Involved

With the Build Back Better Act, Congress Threatens Progress for Americans with Rare Diseases

Posted at November 11, 2021 08:15 am by Rohan Narayanan

As Congress continues to debate the policies to include in the final version of the Build Back Better Act, the House of Representatives has inexplicably chosen to take aim at one of the most vulnerable populations in our nation: the rare disease community. The Build Back Better Act, H.R. 5673, currently includes a harmful provision that threaten the… Read More

Tags: Congress, Orphan Drug Act, orphan drug tax credit, Peter Saltonstall, House, House of Representatives, Build Back Better, Build Back Better Act, BBB, BBBA

November 1, 2021

TOPIC: Press Releases, Advocacy

Protecting Patients and Telehealth Access: Over 230 National Organizations Urge Governors Across the Country to Maintain and Expand Licensure Flexibilities Throughout Federal Public Health Emergency

Posted at November 11, 2021 07:30 am by Rohan Narayanan

Letter to Governors Stresses Urgency of Expiring Licensure Waivers and its Impact on Patient Access to Care

Washington, DC – November 1, 2021 – Today, more than 230 organizations sent a letter to all 50 state governors urging them to maintain and expand licensure flexibilities enacted at the start of the pandemic for the duration of the… Read More

Tags: Coalition, covid-19, pandemic, telehealth, ALS Association, governor, governors, Alliance for Connected Care, state government, state

October 29, 2021

TOPIC: Press Releases, Featured News, Advocacy

NORD Response to New Draft of the Build Back Better Act

Posted at October 10, 2021 01:07 pm by Rohan Narayanan

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to newly introduced draft of the Build Back Better Act (H.R. 5376):

Peter Saltonstall, CEO and President of NORD, stated: “As negotiations continue on the Build Back Better Act, NORD urges Congress to remove this harmful provision which would gut a key incentive from the 1983 Orphan… Read More

Tags: Congress, Orphan Drug Act, legislation, ODTC, orphan drug tax credit, Senate, House of Representatives, Build Back Better, Build Back Better Act, Reconciliation, Bill