PatientLikeMe.com is an initiative by 3 MIT engineers and was founded in 2004.

Their mission is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. It is a platform for collecting and sharing real world, outcome-based patient data and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits.

As per the site, they have around 78611 total patients and the Sex Distribution is 74% female and 26% male.

The site claims to share the relevant data with medical research and pharma companies in a de-identified manner so that no individual patient information is leaked out.

Also, it is entirely upto an individual member to share his/her personal medical data with other members.

The site looks great and i liked the concept too. What is better than to find a fellow who is also going through the same situation as you and can share the pain. It is true that the pain of a disease is only realized by the one who has actually gone through it.

The site is also a great way to share your personal experience about how you coped up with the disease and what all medication and doctors helped you. You might find a person in a country with no such medical help as you would have got to cure you. Just go, join and help them with your experience and if possible connect them with the doctors who helped you cure that disease.