Resource: National Organization for Rare Disorders (NORD)

 

Image: Logo for NORD; accessed 6/10/24

RESOURCE: National Organization for Rare Disorders (NORD)

     There are many organizations that provide information, resources, and support for health conditions or diseases. An example is The American Heart Association. Just two of their roles are teaching Cardio-Pulmonary Resuscitation (CPR) and funding research for treatments for heart disease. Heart disease is the leading cause of death in the USA, accounting for 702,880 fatalities in 2022 (www.CDC.gov; accessed 6/18/24). Since many people have heart disease, the organization is large and offers many services. 

(https://www.heart.org), open the link  

To locate an organization dedicated to the condition or diagnosis of your loved one, enter the diagnosis in the search bar of your computer.

     However, some diseases or conditions affect only a small number of people. It may be hard to find information on causes and treatments. My husband Mike was diagnosed with Obstructive Sleep Apnea (OSA) in the 1980's. At that time, little was known about the condition. Before OSA was identified, doctors thought that his poor sleep, high blood pressure, and heart arrhythmia were separate issues, not that they were all the result of low levels of oxygen in the blood during sleep. It was at that time that he found NORD. The organization provides information and advocacy for people with little known disorders. The combined efforts help people who would otherwise be quite isolated and have little hope of bringing about change to assist with immediate help and research for future treatment. 

Today the featured resource is National Organization for Rare Disorders (NORD) 

open the link    (https://rarediseases.org)

Image: Home Page for NORD; accessed 6/10/24