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April 16, 2019

TOPIC: Featured News, Medical, Patients & Members

NORD Publishes Report on Primary Distal Renal Tubular Acidosis

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

April 9, 2019

TOPIC: Events, Featured News, Get Involved, Patients & Members

Living Rare, Living Stronger full agenda with speakers now available

Posted at April 4, 2019 08:52 am by Christina Jensen

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

March 28, 2019

TOPIC: Featured News, Patients & Members

NORD Video Provides Advice for the Newly Diagnosed

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

March 20, 2019

TOPIC: Get Involved, Patients & Members, Sticky Posts for Homepage

Hear from NORD’s registry community

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.