You know what that means! Time to fire up the awareness machine.


According to the National Institute of Health, Rare Disease is “defined as a condition that affects fewer than 200,000 people [in the US].

In the United States, “The total number of Americans living with a rare disease is estimated at between 25-30 million.”

Ultimately, there are somewhere around 7,000 rare diseases.

Cystic fibrosis is a rare disease.

The above number is important because “while individual diseases may be rare, the total number of people with a rare disease is large.”

We’re talking about power in numbers here. State and Federal governments use the umbrella term, “rare disease,” when passing legislation. The prime example is the Orphan Drug Act passed under the Reagan Administration.

I’ve talked about that a bit on here before, but as the NIH puts it, “The Orphan Drug Act created financial incentives to encourage companies to develop new drugs for rare diseases. The rare disease definition was needed to establish which conditions would qualify for the new incentive programs.”

A similar financial conflict exists for governments as well (whether you’d like to believe it or not). Assuming tax revenue actually exists, how can we justify taking a net loss on tax dollars in providing for a terminally ill person?

I’ll let you do the math yourself.

The bottom line is that people with rare genetic disease are innocent victims. We haven’t chosen this life (like smokers have), rather it was given to us and we are making the very best of it. Those of us with cystic fibrosis, sickle cell and others, have power in numbers together, and that’s what Rare Disease Week is all about. All 25-30 million of us are part of a large minority in the general population…

Our right to Life, Liberty and the pursuit of happiness is just as warranted as anyone else’s.