Quantcast
Last updated on April 17, 2014 at 12:46 EDT

Latest National Organization for Rare Disorders Stories

2012-05-15 10:25:00

WASHINGTON, May 15, 2012 /PRNewswire-USNewswire/ -- The House and Senate versions of "PDUFA V" are on track for timely congressional approval and represent the most significant legislative advances for the rare disease community since the Orphan Drug Act, speakers at a forum hosted by the National Organization for Rare Disorders (NORD) said today. (Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b) They also said the new provisions reflect years of hard work by NORD and its...

2012-04-12 06:26:28

Program Provides Expedited Review for People with Severely Disabling Diseases WASHINGTON, April 12, 2012 /PRNewswire-USNewswire/ -- Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), today thanked the Social Security Administration (SSA) for expanding the list of "Compassionate Allowances" to provide fast-track disability decisions to Americans with the most seriously disabling medical conditions. (Logo:...

2012-04-06 10:20:42

WASHINGTON, April 6, 2012 /PRNewswire-USNewswire/ -- In partnership with Corcept Therapeutics Inc., the National Organization for Rare Disorders (NORD) has established a Cushing's Syndrome Patient Assistance Program for patients with endogenous Cushing's syndrome who need financial assistance with certain costs related to their medical diagnosis and/or care. (Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b) Endogenous Cushing's syndrome is a serious and debilitating rare...

2012-03-08 08:30:00

Bill to Expedite Development of Therapies for Patients with Unmet Medical Needs WASHINGTON, March 8, 2012 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) supports proposed legislation introduced this week by Representatives Cliff Stearns (R-FL) and Edolphus (Ed) Towns (D-NY) to accelerate the development of innovative therapies for people with serious or life-threatening diseases. (Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b) H.R. 4132,...

2012-02-29 06:00:00

LEXINGTON, Mass., Feb. 29, 2012 /PRNewswire/ -- Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, today announced its support of Rare Disease Day, an annual, worldwide initiative that calls attention to rare diseases as a public health issue and highlights the need for more understanding and awareness about these diseases. Observed annually on the last day of February, Rare Disease Day is coordinated at the international level by the European Organisation...

2012-02-29 05:00:00

MALVERN, Pa., Feb. 29, 2012 /PRNewswire/ -- Auxilium Pharmaceuticals, Inc. (Nasdaq: AUXL), a specialty biopharmaceutical company, will join with the National Organization for Rare Disorders (NORD) in observing Rare Disease Day today. The purpose of Rare Disease Day will be to focus attention on the needs of patients and families impacted by rare diseases. (Logo: http://photos.prnewswire.com/prnh/20101202/MM10881LOGO ) "Individuals and organizations around the world will all be sharing...

2012-02-28 06:00:00

Patients and supporters promote awareness on Rare Disease Day WASHINGTON, Feb. 28, 2012 /PRNewswire-USNewswire/ -- From scientific symposia to balloon launches and coloring contests, the global rare disease community will be observing Rare Disease Day on Feb. 29. This annual event highlights the need to focus attention on rare diseases as a public health concern. (Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b) The National Organization for Rare Disorders (NORD)...

2012-02-17 06:00:00

MIDLOTHIAN, Va., Feb. 17, 2012 /PRNewswire-USNewswire/ -- Patient Services, Inc. will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29. The purpose is to focus attention on the needs of patients and families affected by rare diseases. "This is a global observance," said Peter L. Saltonstall, president and CEO of NORD. "Individuals and organizations around the world will all be sharing stories of how rare...

2012-02-15 16:07:00

Bill to Accelerate Development of Treatments for Patients with Unmet Medical Needs WASHINGTON, Feb. 15, 2012 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) supports proposed legislation introduced today by U.S. Senator Kay Hagan (NC) intended to accelerate the development of medical treatments for people with unmet medical needs. Known as the TREAT Act, the bill focuses on regulatory innovation in areas such as the accelerated approval and fast-track...

2012-01-31 13:40:00

Patients Will Share What It's Like to Live With A Rare Disease on February 29 WASHINGTON, Jan. 31, 2012 /PRNewswire-USNewswire/ -- On the ultimate rare day - February 29th - millions of people around the world will be observing Rare Disease Day. (Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b) And in the U.S., more than 630 patient organizations, government agencies, research centers and companies, who have signed up as "Rare Disease Day Partners," will join the...