According to a story from the Washington Post, rare diseases are a much more widely spread problem than you might think. There are at least 7,000 diseases that are considered rare under the US Food and Drug Administration’s (FDA) definition, which is any disease that affects less than 200,000 people in the country. This adds up to around ten percent of the country (or around 30 million) being affected by rare diseases. Rare diseases, when combined together, aren’t such a rare problem after all. However, there is still a major lack of information and resources for people that want to learn more. Thankfully, the National Organization for Rare Disorders (NORD) has its own Rare Disease Database that is helping meet this need.
The NORD Rare Disease Database
NORD is one of the leading non-profit organizations in the US that is dedicated to helping advocate for rare disease patients and supporting other rare disease-related organizations. The group provides resources for patients/patient families, scientists and researchers, and patient organizations. The Rare Disease Database is certainly one of the group’s most impressive achievements, with detailed information on over 1,200 rare conditions ranging all the way from Aarskog syndrome to Zollinger-Ellison syndrome.
Another great thing about the database is that it can also help patients and their families get connected to crucial, potentially life-saving resources, such as relevant support organizations and even clinical trials that are testing new treatments. The value of this database runs deep, because one of the biggest problems in getting rare disease patients treated successfully is that overall lack of awareness about them.
Awareness is Essential
With the many thousands of rare illnesses out there, awareness isn’t a problem just among the general public; many physicians and doctors aren’t familiar with them as well. This makes getting a proper diagnosis a huge challenge for many patients. Awareness is also critical for getting support for essential research that can lead to treatments or cures.
Getting a rare disease diagnosis can be a scary and utterly life-changing event and it is easy for patients to get overwhelmed when trying to learn more about their disease and figure out how they are going to face the challenges that lie ahead. However, there are resources and people who care out there, and NORD’s Rare Disease Database isn’t a bad place to start.
To learn more about the National Organization for Rare Disorders, click here.
To check out the database, click here.
