Rare Disease News

The National Health Council and NORD Commend House Passage of FDA User Fee Reauthorization; Urge Senate to Follow Suit

Published July 12, 2017 by NORD

Categorized in -

Washington, D.C., July 12, 2017 – The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) commend the House of Representatives for passing the FDA Reauthorization Act (FDARA) …

Continue reading “The National Health Council and NORD Commend House Passage of FDA User Fee Reauthorization; Urge Senate to Follow Suit”

NORD Rare Action Network℠ Releases Summer 2017 State Policy Legislative Tracker

Published June 30, 2017 by NORD

Categorized in -

NORD releases Summer 2017 Legislative Tracker showing that bills that are being tracked that will affect people with rare diseases.

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Published June 29, 2017 by NORD

Categorized in -

Update: June 29, 2017–Today, H 239, a bill that would establish a Rare Disease Adviosry Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state …

Continue reading “Rare Disease Advisory Council Bill Moves through Pennsylvania House”

NORD Issues Statement on the FDA’s Orphan Drug Modernization Plan

Published June 29, 2017 by NORD

Categorized in -

Washington, D.C., June 29, 2017 — The following statement was issued today by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), following the FDA’s announcement …

Continue reading “NORD Issues Statement on the FDA’s Orphan Drug Modernization Plan”

NORD Issues Statement in Response to Delay in Consideration of the Senate Better Care Reconciliation Act

Published June 27, 2017 by NORD

Categorized in -

Washington, D.C., June 27, 2017—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 …

Continue reading “NORD Issues Statement in Response to Delay in Consideration of the Senate Better Care Reconciliation Act”

NORD Issues Statement on the Better Care Reconciliation Act of 2017

Published June 22, 2017 by NORD

Categorized in -

Washington, D.C., June 22, 2017 – 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 …

Continue reading “NORD Issues Statement on the Better Care Reconciliation Act of 2017”

NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage

Published June 20, 2017 by NORD

Categorized in -

Washington, D.C., June 20, 2017 – The National Organization for Rare Disorders (NORD), an independent nonprofit organization representing the 30 million Americans with rare diseases, has launched a nationwide campaign to …

Continue reading “NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage”

NORD Issues Statement on Confirmation of New FDA Commissioner, Dr. Scott Gottlieb

Published May 10, 2017 by NORD

Categorized in -

Washington, D.C., May 10, 2017—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 …

Continue reading “NORD Issues Statement on Confirmation of New FDA Commissioner, Dr. Scott Gottlieb”

NORD Issues Statement on Today’s Passage of the American Health Care Act

Published May 4, 2017 by NORD

Categorized in -

Washington, D.C., May 4, 2017—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 …

Continue reading “NORD Issues Statement on Today’s Passage of the American Health Care Act”

Patient Advocacy Organizations Outline Joint Position on Expanded Access to Experimental Drugs for Seriously Ill Patients

Published May 2, 2017 by NORD

Categorized in -

WASHINGTON, D.C., May 2, 2017–Seven patient advocacy organizations today laid out a joint set of principles to guide any efforts that seek to change the process of accessing unapproved therapies …

Continue reading “Patient Advocacy Organizations Outline Joint Position on Expanded Access to Experimental Drugs for Seriously Ill Patients”