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Last updated on April 20, 2014 at 21:20 EDT

Latest National Organization for Rare Disorders Stories

2014-04-04 12:27:44

NORD to Present Awards at "Portraits of Courage" Celebration on May 8th in Washington, DC WASHINGTON, April 4, 2014 /PRNewswire-USNewswire/ -- Rare disease patient advocates, two members of Congress and companies that have brought novel new therapies to patients will be honored at the "Portraits of Courage Celebration" of the National Organization for Rare Disorders (NORD) on Thursday, May 8, at the National Building Museum in Washington, DC....

2014-02-28 12:27:25

WHIPPANY, N.J., Feb. 28, 2014 /PRNewswire/ -- Bayer HealthCare is joining the National Organization for Rare Disorders (NORD) and others in raising awareness of Rare Disease Day, which is being celebrated today around the world. (Photo: http://photos.prnewswire.com/prnh/20140228/NY74321 ) Rare Disease Day 2014 activities by Bayer will include participation in state government awareness events and employee engagement via the NORD "Handprints Across America" photo gallery. "While...

2014-02-24 12:27:14

MIDLOTHIAN, Va., Feb. 24, 2014 /PRNewswire-USNewswire/ -- Patient Services, Inc. (PSI) will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 28, 2014. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as a global public health concern. http://photos.prnewswire.com/prnvar/20140224/DC70603LOGO "Everyone knows someone with a rare...

2013-10-07 08:25:49

Makovsky Health VP Bernstein Presents at 2013 DIA-NORD Conference in Bethesda, MD, October 7-9 NEW YORK, Oct. 7, 2013 /PRNewswire/ -- New health economics research assessing the current impact of the Orphan Drug Act (ODA) suggests the law continues to play a crucial role in stimulating drug development for small patient populations. The descriptive study is presented this week as a poster at the 3(rd) Annual DIA-NORD Conference on Rare Diseases & Orphan Products in Bethesda, MD....

2013-10-02 23:01:39

Despite federal incentives for drug companies to create treatments for rare diseases, thousands of people are still searching for lifesaving therapies. In many cases, patients and those working on their behalf are taking matters into their own hands. Bethesda, MD (PRWEB) October 02, 2013 Katheryn Elibri, whose 7-year-old daughter has a rare genetic disease known as CDKL5 and has seizures almost daily, helped begin a foundation to fund research for a cure. Other parents—like Lisa Schill,...

2013-09-13 23:01:19

Register Now to Attend Premier Conference on Orphan Product Development, Emerging Markets and Outlook for Investment. Horsham, PA (PRWEB) September 13, 2013 The early registration deadline for the third annual U.S. Conference on Rare Diseases and Orphan Products is Monday, Sept. 16. Co-sponsored by the National Organization for Rare Disorders (NORD) and DIA in collaboration with the Food and Drug Administration (FDA) and EURORDIS (Rare Diseases Europe), the conference will take place from...

2013-08-07 12:27:11

Seeking to Protect Infants and Children from Lifelong Neurological Impairment DANBURY, Conn., Aug. 7, 2013 /PRNewswire-USNewswire/ -- A 14-year-old Connecticut boy has joined the National Organization for Rare Disorders (NORD) in alerting pediatricians and other physicians to a rare medical condition that can leave babies with lifelong disability. (Photo: http://photos.prnewswire.com/prnh/20130807/DC60396) (Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b) The boy,...

2013-08-05 23:02:03

Bill Corr to Kick Off Conference 30 Years After Passage of Orphan Drug Act. Horsham, PA (PRWEB) August 05, 2013 Bill Corr, deputy secretary of the U.S. Department of Health and Human Services, will deliver the keynote address at the third annual U.S. Conference on Rare Diseases and Orphan Products in Bethesda, Md., on Oct. 7, 2013. Corr was vital in the passage of the Orphan Drug Act (ODA), serving as counsel to the U.S. House of Representatives’ Subcommittee on Health and the...

2013-07-23 23:04:05

Key Stakeholders in Rare Disease Community to Discuss the New Era in Health Care Bethesda, MD (PRWEB) July 23, 2013 Patient advocates, industry leaders, researchers, regulatory officials, investors and thought leaders dedicated to advancing the development of and access to therapies for rare diseases will come together for the third annual U.S. Conference on Rare Diseases and Orphan Products, held in Bethesda, Oct. 7–9. The conference is hosted by DIA and the National Organization for...

2013-05-15 08:30:04

AWARD RECOGNIZES MEDICAL INNOVATION OF CYSTARAN(TM) GAITHERSBURG, Md., May 15, 2013 /PRNewswire/ -- Sigma-Tau Pharmaceuticals, Inc. announced today that the Company was recognized last evening as a rare disease pioneer at the 30(th) anniversary celebration of The National Organization for Rare Disorders (NORD). During the event, Sigma-Tau received an innovation award for the development of CYSTARAN(TM) (cysteamine ophthalmic solution) 0.44% -- the first and only approved therapy...