Rare Disease News

NORD Issues Statement on New FDA Commissioner Robert Califf, M.D.

Published February 24, 2016 by NORD

Categorized in -

The following statement was issued today by Peter L. Saltonstall, President and CEO of NORD, on the confirmation by the U.S. Senate of Robert Califf, M.D., as Commissioner of the …

Continue reading “NORD Issues Statement on New FDA Commissioner Robert Califf, M.D.”

FDA Approves 21 Orphan Drugs for Rare Diseases in 2015, Sets Record for Second Consecutive Year

Published January 4, 2016 by NORD

Categorized in -

The U.S. Food and Drug Administration announced today it approved 21 new orphan drugs to treat rare diseases in 2015, nearly half (47 percent) of all novel new drugs approved …

Continue reading “FDA Approves 21 Orphan Drugs for Rare Diseases in 2015, Sets Record for Second Consecutive Year”

Get Involved in Your State on Rare Disease Day

Published December 17, 2015 by NORD

Categorized in -

On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare.

NORD Developing 20 Natural History Studies for 20 Rare Diseases

Published December 9, 2015 by NORD

Categorized in -

NORD to Build and Launch 20 Natural History Studies Based on Lottery System

Rare Disease Day 2016 Theme and Slogan Announced!

Published September 16, 2015 by NORD

Categorized in -

Theme: Patient Voice Slogan: Join us in making the voice of rare diseases heard It’s here! As the official sponsor and host of Rare Disease Day in the U.S., NORD …

Continue reading “Rare Disease Day 2016 Theme and Slogan Announced!”

NORD Issues Statement on NIH Appointment of New Director for Office of Rare Diseases Research

Published September 4, 2015 by NORD

Categorized in -

Press Releases

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on the announcement that Petra Kaufmann, M.D., M.Sc., has been named director of …

Continue reading “NORD Issues Statement on NIH Appointment of New Director for Office of Rare Diseases Research”

New Video from NORD Promotes Awareness of Rare Movement Disorder Neurogenic Orthostatic Hypotension

Published August 24, 2015 by NORD

Categorized in -

New video promotes awareness and educates doctors about Neurogenic Orthostatic Hypotension

Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases

Published June 17, 2015 by NORD

Categorized in -

Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” …

Continue reading “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases”

Global Voice for Rare Disease Patients Launches Today: Rare Diseases International

Published May 28, 2015 by NORD

Categorized in -

Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today. More than 60 patient representatives from 30 countries are gathering in Madrid, …

Continue reading “Global Voice for Rare Disease Patients Launches Today: Rare Diseases International”

NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative

Published May 21, 2015 by NORD

Categorized in -

NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and …

Continue reading “NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative”