February 28 is Rare Disease Day. Join March of Dimes and the National Organization for Rare Diseases (also called NORD) to raise awareness about these diseases and the impact they have on individuals and families and the communities where they live.
In the United States, a rare disease is any disease, disorder, illness or condition that affects less than 200,000 people. Health conditions, such as Tay-Sachs, ocular toxoplasmosis, fragile X syndrome and amyotrophic lateral sclerosis (also called ALS or Lou Gehrig’s disease), are just a few examples.
NORD says that more than 7,000 rare diseases affect about 30 million people in the United States. NORD estimates that 1 in 10 people in this country have a rare disease, and more than half of them are children.
If you have a rare disease, you may not know much about it, how it’s treated or how it may affect our health and quality of life over time. Sometimes it’s hard to diagnose a rare disease, so you may not know you need treatment.
We don’t know the cause of most rare diseases. Some may be genetic (caused by genes). This is why knowing your family health history is so important, especially if you’re pregnant or planning to have a baby. Use our family health history form to learn about health conditions, including rare diseases that run in your family. Share your family health history with your health care provider to help identify conditions that may affect your baby’s health.
To learn more about rare diseases, visit: rarediseases.org