In the United States, a rare disease is defined as an illness that affects fewer than 200,000 people. The prevalence of a rare disease usually is an estimate and may change over time.
Rare diseases affect 1 in 10 Americans. Over 30 million people in the United States, and 350 million people in the world have a rare disease. According to the U.S. Department of Health and Human Services and the National Institutes of Health, there are about 7,000 rare diseases and about 95% of all rare diseases do not have a single FDA approved drug treatment. There are less than 500 treatments approved by the FDA for the nearly 7000 rare diseases which have been identified.
CheckOrphan is the leading independent news and information source for all rare disease and orphan products. It maintains a growing database of over 100,000 news articles about rare diseases, in addition to: video, events, research, clinical trials and other databases. It has a staff of people that have worked in industry and/or academia. CheckOrphan’s mission is to promote all entities (industry, academia, patient alliances and organization, government) working with rare diseases and to implement solutions that help them better obtain their goals.
CheckRare is a clinical-focused media platform that provides news and practical information that can help in diagnosing and treating patients with rare diseases. We focus on new treatments and clinical trials that help clinicians stay familiar with the latest developments and treatment options. Our areas of main focus are:
- Diagnosing and treating rare diseases
- Understanding rare diseases
- Raise awareness for clinical trials
- News and insight on rare diseases and orphan drugs
We provide reliable and easy-to-understand information about rare or genetic diseases to:
- Patients and family members
- All health care providers including, physicians, nurses, and genetic counselors
- Researchers and scientists
- Advocacy groups
Our editors, writers, and information specialists get our information from a number of sources, including NIH resources., Medical textbooks, Journal articles, Websites, and Medical databases.