Written by Laura Mullen on September 27, 2019
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.
Written by Lisa Sencen on February 1, 2019
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
Written by Lisa Sencen on August 1, 2018
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
Written by Lisa Sencen on January 24, 2017
Please join NORD Rare Action Network team Tuesday, January 24, 2017 at 3:00pm EST for a webinar to take an in-depth look into the recently published 2016 state policy report card.
Tim Boyd, Associate Director of State Policy will present on the findings in the report card… Read More
Written by Lisa Sencen on May 23, 2016
Save the date for the 2016 NORD Summit! Attendees can look forward to:
- Timely Topics
- Sessions on genetic innovation, collaborations across borders, reimbursement, pricing and access, off-label concerns, driving progress through policy and more.
- Inspiring Perspectives
- Hear from manufacturers, patients, advocates, legislative and regulatory leaders, academics,… Read More