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VHL Alliance and NORD Launch New International Databank; Patient-Driven Registry Will Collect Data, Addressing Fundamental Need in Rare Disease Community
May 14, 2014 - NORD and VHL Alliance partner to create the VHL Alliance’s databank, providing what is widely recognized as one of the greatest needs of the rare disease community – natural history data to help medical researchers better understand how diseases develop and progress over time
National Organization for Rare Disorders to Honor Two Members of Congress, Patient Advocates and Orphan Product Innovators
April 1, 2014 - NORD to Present Awards at “Portraits of Courage” Celebration on May 8th in Washington, DC.
NORD Opposes Congressman Camp’s Proposed Repeal of Orphan Drug Tax Credit, Says It Threatens Health of People with Rare Diseases
February 27, 2014 - A statement issued today by Peter L. Saltonstall, President and CEO of NORD, opposes repeal of Orphan Drug Tax Credit.
NORD Commends Expansion of SSA’s “Compassionate Allowances” List
January 15, 2014 - People with rare diseases often experience devastating financial challenges, NORD president says.
Genzyme and NORD Establish Program to Help Undiagnosed Patients with Rare Diseases
December 16, 2013 - New fund will help patients with mysterious, undiagnosed medical conditions who have applied to the NIH Undiagnosed Diseases Program, but who cannot afford the basic medical tests needed to make them eligible to participate
More Than 100 Rare Disease Patient Organizations and Medical Experts Join NORD in Urging Congress to End the Shutdown
October 11, 2013 - Delays in vital medical research and development of therapies harm children and adults with rare diseases.
NORD Publishes New Online Physician’s Guide to Gaucher Disease
September 4, 2013 - Guides are produced by NORD to promote earlier diagnosis and treatment for patients.
Connecticut Boy Helps Alert Physicians to Rare Seizure Disorder
August 27, 2013 - 14-year old boy is seeking to protect infants and children from lifelong neurological impairment.
60+ Patient Organizations Join NORD in Letter to Congress Today
July 25, 2013 - More than 60 rare disease patient organizations signed letter to key members of Congress by NORD in support of maintaining the Orphan Drug Tax Credit.
NORD Senior VP Elected to USP Expert Committee
July 10, 2013 - J. Russell Teagarden of NORD has been elected to the Therapeutic Information and Formulary Support Expert Committee of the U.S. Pharmacopeial Convention.

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