February 28th is Rare Disease Day , a day dedicated to raising awareness of the nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.
In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe.
Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, get treatment and to connect with others like themselves. As expected, the rarity of their conditions makes everything more difficult.
With the explosive growth of the internet and social media platforms, people with rare diseases are connecting at unprecedented rates. Rare disease marketing is fast becoming the poster child for pharma’s version of long-tail marketing. Continue reading