Posted at April 4, 2019 09:12 am by Christina Jensen
NORD has published a report in its Rare Disease Database on primary distal renal tubular acidosis (dRTA), a rare genetic disorder that affects the ability of the kidneys to remove acid from the blood. It is caused by a mutation in one of at least three different genes resulting in a faulty,… Read More
Posted at March 3, 2019 09:26 am by Christina Jensen
A rare diagnosis can be a frightening and isolating experience, whether you are the patient or a caregiver for a loved one. However, NORD has created a video providing tips for newly diagnosed patients and families as they begin their journey down this new road. One of the key messages is that you are… Read More
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.
In recent years, NORD has provided Patient Assistance Programs to assist the Chronic Granulomatous Disease (CGD), Cystinosis and Urea Cycle Disorders (UCD) communities. As of Monday, March 18, we are delighted to announce an expansion to the support we are able to provide to these communities. See below for information on each of the three expanded… Read More