Published April 18, 2019 by NORD
The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights and practical tools for living their best lives …
Read morePublished April 16, 2019 by NORD
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 …
Continue reading “NORD Publishes Report on Primary Distal Renal Tubular Acidosis”
Read morePublished April 9, 2019 by NORD
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 …
Continue reading “Living Rare, Living Stronger full agenda with speakers now available”
Read morePublished March 28, 2019 by NORD
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 …
Continue reading “NORD Video Provides Advice for the Newly Diagnosed”
Read morePublished March 20, 2019 by NORD
NORD IAMRARE Registry users share their thoughts on how their patient registries are benefiting their communities and how they are using the data.
Read morePublished March 19, 2019 by NORD
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 …
Continue reading “NORD announces expansion of three Patient Assistance Programs”
Read morePublished March 6, 2019 by NORD
Your stripes were shown! See how the rare disease community worked together to make Rare Disease Day 2019 reach the world at large!
Read morePublished February 25, 2019 by NORD
The following story was submitted by Katia Luedtke in honor of Rare Disease Day. In this story, Katia shares her family’s journey of searching for and receiving a diagnosis for …
Continue reading “Connor’s Story in Honor of Rare Disease Day”
Read morePublished February 12, 2019 by NORD
The following story was submitted by Sarah Stuker in honor of Rare Disease Day. In this story, Sarah shares her family’s journey of searching for and receiving a diagnosis for …
Continue reading “India’s Story in Honor of Rare Disease Day”
Read morePublished February 12, 2019 by NORD
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, …
Continue reading “McCarthy Story in Honor of Rare Disease Day”
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