Posted at March 3, 2019 11:03 am by Christina Jensen
During the 2018 Rare Diseases & Orphan Products Breakthrough Summit, NORD spoke with its IAMRARE registry users to get their thoughts on how their patient registries are benefiting their communities and how they are able to use the data. See the videos below and on our Youtube channel here.
Posted at March 3, 2019 04:38 pm by Christina Jensen
This year, NORD launched the #ShowYourStripes awareness campaign in time for Rare Disease Day (RDD) with a goal of increasing attention on rare diseases and engaging our community. Judging by the number of events, attendance at events, extensive media coverage, robust social media engagement and beyond, NORD is very proud to say that Rare Disease Day 2019 was a… Read More
Posted at December 12, 2018 10:46 am by Laura Mullen
Danbury, CT, December 3, 2018 – The National Organization for Rare Disorders (NORD) has announced a meeting for patients, caregivers and the medical community. The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will take place June 21 – 23 in Houston, Texas. In addition, the 2019 Rare Impact Awards… Read More
Posted at January 1, 2016 04:25 pm by Christina Jensen
For the ninth consecutive year, runners will join together to help raise awareness for rare diseases while fundraising to support the NORD Undiagnosed Diseases Network (UDN) Patient Assistance Program.
The 2016 team is looking for runners to join the Boston, Providence Marathon and half Marathon teams, as well as RARE Community Partners. When you join the Running for Rare Team,… Read More