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February 13, 2018

TOPIC: Advocacy, Featured News

One-pager from NORD on Opposition to Right to Try Act

Posted by Laura Mullen

Washington, D.C., February 13, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today followed up on the recent coalition letter emphasizing the patient and provider community’s opposition to the Right to Try Act (H.R.878 and S.204) with a one-pager which distills why the Right… Read More

February 8, 2018

TOPIC: Advocacy, Featured News

NORD Statement Regarding State Proposals to Alter Their Medicaid Program

Posted by Laura Mullen

Washington, D.C., February 8, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding recent state proposals to alter their Medicaid program by utilizing the federal 1115 Waiver process:

“In an attempt to control health care costs and improve services… Read More

February 8, 2018

TOPIC: Featured News, Medical, Research

Current Funding Opportunity: NORD Research Grants for Rare Diseases

Posted by Christina Jensen

The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has announced the availability of three research grants as part of its Rare Disease Research Grant Program. NORD encourages all U.S. and international researchers interested in studying one or more of these diseases to review… Read More

February 6, 2018

TOPIC: Advocacy, Featured News, Industry

NORD Sends Letter to House of Representatives on Right to Try Act

Posted by Laura Mullen

Washington, D.C., February 6, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today joined 37 patient and provider organizations in sending a letter to the House of Representatives in opposition to the Right to Try Act.

NORD supports all patients with serious and life-threatening diseases gaining access to potentially lifesaving… Read More

January 26, 2018

TOPIC: Advocacy, Featured News, Industry

NORD Issues Statement on Confirmation of New Secretary of HHS, Alex Azar

Posted by Laura Mullen

Washington, D.C., January 26, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on the confirmation by the U.S. Senate of Alex Azar, as Secretary of the Department of Health and Human Services (HHS):

“We at the National Organization for Rare Disorders look forward to working with Alex… Read More