Did you know this?
A rare disease is one that affects fewer than 200,000 people in the United States. There are nearly 7,000 rare diseases. More than 25 million Americans have one.
25 million people. Wow. That’s a lot of people. Did you know this about rare diseases?
- May involve chronic illness, disability, and often premature death
- Often have no treatment or not very effective treatment
- Are frequently not diagnosed correctly
- Are often very complex
- Are often caused by changes in genes
It can be hard to find a specialist who knows how to treat your rare disease. Disease advocacy groups, rare disease organizations, and genetics clinics may help you to find one.
Maybe you know someone who has a rare disease. (Chances are you do and it may be a child.) Maybe you have a rare disease yourself. Just know that the bright medical and scientific minds at the National Institutes of Health are on it. Yesterday, they hosted “Rare Disease Day to raise awareness about rare diseases, the people they affect, and research collaborations that are making a difference.” With severe cuts to scientific programs and health initiatives like this coming down the pike very soon (you can expect very little intellectual and monetary support for a vital federal government agency like NIH), one wonders how many men, women, and children — Americans all — will draw the short straw. Again.
At least 25 million of us.