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Doctorpedia Reviews

NORD (National Organization for Rare Disorders)

July 24, 2019

Overview

 

The National Organization for Rare Disorders (NORD) “is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.” The organization aims to raise awareness for the challenges people with rare diseases face and wants to provide access for all patients to treatments and diagnostics.

 

Description

 

The NORD website features information and resources for many different groups of people. The site is segmented by “Patients and Families”, “Patient Organizations”, and “Clinicians and Researchers” so that users can find the resources that suit their needs. Users can also find links to advocate and get involved in the organizations programs.

The organization aims to raise awareness for the challenges people with rare diseases face and wants to provide access for all patients to treatments and diagnostics.”

Trigeminal Neuralgia

 

There is a Trigeminal Neuralgia section of the NORD website that features information from a physician about the various aspects of the condition. Users can learn about symptoms, causes, diagnosis, related conditions, treatments, and more. There are even links to other organizations that can help patients with the condition.

 

Patient Assistance Programs

 

NORD provides assistance programs so that people who need life-saving or life-sustaining medications can get access to those medications that they could otherwise not be able to afford. These programs include financial assistance with insurance, travel assistance for clinical trials or specialists, and medication. Users can find a list of the medications and find out if they are eligible for the programs.

 

Video Library

 

The NORD website also has a video library where you can watch videos from patients who are dealing with rare diseases. It can be helpful to hear other people’s stories and see if they can give you a sense of encouragement, tips, or guidance.

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