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April 18, 2019

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

Become a rare disease mythbuster during NORD’s Living Rare, Living Stronger Patient & Family Forum

Posted by Christina Jensen

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 with rare diseases, with tracks for newly diagnosed patients, long-term patients, caregivers, physicians and medical students. Download the full agenda now for a… Read More

April 17, 2019

TOPIC: Featured News, Medical, Press Releases, Research

The 2019 Rare Neurological Disease Special Report Is Now Available

Posted by Christina Jensen

This 5th annual issue is the largest to date and focuses on the progress
in medical science, genetics, and neuromuscular diseases

Parsippany, NJ – April 16, 2019 – Frontline Medical Communications (FMC) is pleased to announce the publication of the 2019 Neurology Reviews Rare Neurological Disease Special Report. Produced in collaboration with the National Organization for Rare Disorders… Read More

April 16, 2019

TOPIC: Featured News, Medical, Patients & Members

NORD Publishes Report on Primary Distal Renal Tubular Acidosis

Posted 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 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 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