At the Mayo Clinic, there’s the Individualized Medicine Clinic, which personalizes care for patients with odd conditions by using genomic testing. There’s also the National Organization for Rare Disorders (NORD), which unites more than 130 nonprofit voluntary health organizations that work to help those who have rare disorders.

What qualifies as a rare disorder? Usually something that hasn’t been covered in the medical books. It appears in a lone individual and usually works its way up the medical food chain, moving from local doctor to regional hospital to university institution to national health clinic, increasingly drawing in specialists and teams of medical professionals who may be able to determine the root cause of the problem.

Remember the Patient

Keep in mind that a rare diagnosis – or none at all -- takes a tremendous toll on patients and their families. The afflicted deserve compassion -- their quality of life and daily activities are usually curtailed by their condition. Many of them have been to countless doctors and have undergone a long series of ineffective treatments, which can lead to frustration, depression and financial hardship.

Worse, in some cases, there is still no cure, leaving the patient only with the hope that science someday may stumble upon a cure for their affliction or condition. The great hope is genetic testing. As science increasingly maps and understands the complex interactions between damaged or mutated genes, the hope is that we can begin to devise cures for some of the most exotic conditions.

But pharmacological cures are few and far between because the market for extremely rare conditions makes it unprofitable for research companies to invest time and resources in a cure. Even relatively prevalent problems like Lyme disease have suffered because of the lack of a market – imagine if you have something that only a handful of people have ever experienced.