On September 26, BioNews Service published an extensive article written by reporter Larry Luxner, previewing the upcoming NORD Rare Diseases & Orphan Products Breakthrough Summit, which will be taking place October 21-22 in Washington, DC.
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The following story was submitted by Kirk Brazeau in honor of Rare Disease Day. In this story, Kirk shares his family’s journey of receiving a diagnosis for their son, Archer, of Recessive Dystrophic Epidermolysis Bullosa (RDEB). Read on for a harrowing account on hearing about a… Read More
Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking… Read More
Save the date for the 2016 NORD Summit! Attendees can look forward to:
Leading Advocacy Organization Drives Health Policy Improvements for 30 Million Americans with Rare Diseases through Rare Action™ Network
With patient access to health care becoming increasingly dependent upon state policies, the National Organization for Rare Disorders (NORD)® has developed and released the first-ever State Progress Report to evaluate how… Read More
