GREENSBORO, N.C. — Rare diseases impact 30 million Americans nationwide. At least 1 in 10 people are diagnosed with a rare disease, according to the National Organization for Rare Disorders.
About 7,000 diseases are considered rare including all pediatric cancers. But what exactly is a rare disease?
What is a rare disease?
A rare disease is a condition that affects fewer than 200,000 people in the U.S. They are known as orphan diseases because drug companies were not interested in adopting them to develop treatments, according to the Genetic and Rare Diseases Information Center (GARD). The Orphan Drug Act was created to give financial incentives to encourage companies to develop new drugs for rare diseases.
What causes a rare disease?
There are different causes of rare diseases but the majority are thought to get genetic, directly caused by changes in genes or chromosomes, according to GARD. Genetic changes that cause disease are also passed from one generation to the next. However, they can also occur randomly in other cases. It’s also, important to know some rare cancers, and some autoimmune diseases, are not inherited. The exact causes of these many rare diseases is still unknown.
Are rare diseases tracked?
According to GARD, only a few types of rare diseases are tracked in the U.S. once a person is diagnosed. However, because most rare diseases are not tracked, it makes it more difficult to determine the exact number of rare diseases or how many people are affected by rare diseases.
What can you do to help?
There are many ways you can get involved to show your support for rare diseases.
Rare Disease Day
Rare Disease Day is on Monday, Feb. 28. You can take part by wearing zebra stripes or other stripped clothing to raise awareness. If you do dress up, take a photo or video and post it on social media. Use the following hashtags: #ShowYourStripes #RareDiseaseDay
Share Your Story
One of the most impactful ways to get involved is by sharing your rare disease story. You can share your rare disease story with NORD and with WFMY News 2 and by sending an email to cmhodgin@wfmy.com.
Advocacy
You can also become a rare disease advocate. Advocacy is for anyone who wants to help out. Advocacy includes sending emails to lawmakers alerting them to rare disease legislation, alerting city leaders to issues impacting rare disease, sharing your rare disease story. If you want to help out visit the National Organization for Rare Disorders and click on NORD Rare Disease Advocacy.
Find out more about how to contact lawmakers through email. Other ways to contact your Representatives, meet with members of Congress, or write your Representatives.