The long tail of rare medical conditions has mostly been an unexplored market. Office of Rare Disease Research at NIH defines a disease or disorder as rare when it affects fewer than 200,000 people in America. Another non-profit organization, the National Organization for Rare Disorders‘s database lists more than 6,000 rare disorders that cumulatively affect approximately 25 million Americans. No wonder that “Orphan Diseases” is a synonym for the list, aptly describing the lack of attention from commercial organizations.
There are exceptions though, perhaps due to changes like Orphan Drug Act of 1983. Take Genzyme‘s wonder drug cerezyme for example. It’s target population (worldwide) are the roughly 10,000 patients affected with Gaucher’s Disease. For each patient, the drug treatment costs $200,000 annually and is needed for life. No wonder that even with that small target market, cerezyme accounts for about 30% of Genzyme’s revenues, netting close to a billion dollars every year ($1.24B in 2008, for example).
Such exceptional, near-magical stories are not limited to pharma wonderland. Patients with some rare conditions have found exceptional support through dedicated online communities started by inspired individuals who are often patients themselves. PatiensLikeMe was started for ALS, for example. Ben’s Friends was started by Ben Munoz in 2006 for AVM. There are many more niche online destinations for rare conditions, and that fact is hardly surprising.
The really interesting trend, though, is the emergence of companies/organizations that offer something at a higher level; beyond just a focused online destination for an uncommon disease. CureTogether is a good example. By aggregating self-reported data from patients, it aims to create an open-source research database for uncommon conditions. Similarly, Bens’s Friends acts as an incubator and clearinghouse of online communities focused on the long tail of rare medical conditions. They claim to have around 25 networks and over 7,000 patients in their family of ad-supported communities. The sites don’t have huge number of visitors, but that is perhaps due to the implicit rarity of target audience. See the quantcast chart below, for example, where I compare couple of their communities that are supposedly the most popular.
Regardless of visitor numbers, Ben’s Friends points to an interesting evolution phenomenon for healthcare information online. Building communities is now old-school. The new set of ideas are at a higher level of abstraction.