NORD Webinar – Gene Therapy: Yesterday, Today and Tomorrow
Written by Lisa Sencen on August 29, 2019
McCarthy Story in Honor of Rare Disease Day
Written by Lisa Sencen on February 12, 2019
The following story was submitted by Lindsey McCarthy in honor of Rare Disease Day. In this story, Lindsey shares her family’s journey of receiving a diagnosis for their son, James, of a CNTNAP1 mutation. Read on to learn how the McCarthy’s have worked to find other families who… Read More
Chat, Chew, and Be Challenged! Lunchtime Learning at the NORD Rare Summit
Written by Lisa Sencen on September 20, 2018
Make your choice from this menu of thought-provoking, informative Lunch & Learn sessions available for attendees of the 2018 NORD Rare Summit. With only 25 days to go, be sure to save your seat at the table by registering for the Summit and choosing your lunch option now! Lunch &… Read More
NORD 35th Anniversary Blog Series: 2010-2018 (Present)
Written by Jennifer Huron on September 6, 2018
2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate. Our policy, research and other efforts have played a significant… Read More
NORD’s RareEDU™ Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered
Written by Lisa Sencen on July 19, 2018
Washington, D.C., July 19, 2018—The National Organization for Rare Disorders (NORD) today launched Gene Therapy: Your Questions Answered, a new video from its RareEDU educational program addressing some of the most commonly asked questions from patients and caregivers on the topic.