Written by Christina Jensen 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 Christina Jensen 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 Christina Jensen 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 Christina Jensen 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
Written by Christina Jensen on March 16, 2016
Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.
The purpose of this event is to raise awareness at the state level for… Read More