(Editor’s Note: Two new items were added today to the resources page.)

While this site is about putting human faces on this disease, tonight let’s talk about numbers. They are as much a part of the story of this disease as the individuals affected by it.

The truth is that we don’t have any really reliable numbers in terms of how many people are affected by this disease.

We know that between 11,000 and 12,000 Americans were diagnosed with NEC last year. But we also know that before they were diagnosed they averaged three incorrect diagnoses. How many more die of the “side-effects” of the disease without being diagnosed, we don’t know.

We know there are about 125,000 people in the US living with this disease after having been diagnosed with it. But we do not know how many people are living with the disease without knowing they have it.

We know that in recent years diagnoses of the disease have increased by an average of five percent a year. We don’t know why.

We know that frequently, when a doctor finds a single case of NEC, he or she very quickly finds two or three more. We don’t know why.

We also know that the three drugs we have in the US treat the symptoms, but do not offer a cure–although the latest does seem to stop tumor growth in 65 percent of cases.

We know that there is a promising radiation treatment entering initial trials in Houston this year. We know that treatment has met with some success in Europe. But we also know that widespread use of the technique in this country will take years to happen.

We know that if you are rich enough–see Steve Jobs–you can go to Europe and get this treatment. But we also suspect that even that treatment will only extend life with the disease–not cure it.

We know that the National Cancer Institute alone spent more than $600,000,000 on breast cancer research last year.

We know that we spent less than $2.5 million total on NEC research last year.

We know that a lot more people will be diagnosed with breast cancer this year than will be diagnosed with NEC. But we also know the longterm prognosis for those diagnosed with breast cancer will–in most cases–be far better than the longterm prognosis for those diagnosed with NEC.

People tell me that part of the reason there is so little research done on this disease is that it is not cost-effective–that other, more frequent, forms of cancer provide more bang for the research buck–and more profits for the drug companies.

That provides little solace to the families of the thousands who die from this disease every year.