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Archives for: September 27th, 2019

Brazeau Family Story for Rare Disease Day

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

NORD Invites Video Submissions on Advocacy Experience

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

WEBINAR: In-Depth look at the 2016 NORD State Policy Report Card

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

NORD Summit 2016

Written by Lisa Sencen on May 23, 2016

RareSummit2016_live

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