TOPIC: Featured News, Medical, Patients & Members
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
TOPIC: Events, Featured News, Get Involved, Patients & Members
The 2019 Living Rare, Living Stronger NORD Patient and Family Forum promises to be an unforgettable weekend for patients, families, medical professionals and students. Download the agenda now and register by April 26 to take advantage of early bird pricing! Need more enticing?
Here are 10 reasons… Read More
TOPIC: Featured News, Patients & Members
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
TOPIC: Get Involved, Patients & Members, Sticky Posts for Homepage
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.
