One can learn a great deal about how patients feel through what they share online, and those with rare diseases are no exception. The small population of people who suffer from rare disorders has been sharing their experiences in social media, oftentimes before many of these diseases were formally recognized by the healthcare industry.

It would be fair to say that social media’s growing momentum among patients – of all kinds – is paralleled by the industry’s growing focus on addressing the needs of these very small patient populations.

And that social media can help. For a pharmaceutical company that wishes to get involved in a new treatment area, especially if it’s a rare disease, the issue is often raised – how to find out what patients need and what concerns them? And because these “rare” patients are often spread out, social media offers an opportune way to learn about their experiences when traditional research tools’ cannot.

- See more at: http://treato.com/blog/social-media-gives-voice-to-patient-experiences-with-rare-disorders/#prclt-Pypn1dCn

Via Parag Vora