Rare Diseases Hackathon at SUNY Albany

The First Albany Hackathon for Rare Diseases will take place on Saturday September 14th at the campus of the State University of New York at Albany.

The goal of the Hackathon is to start designing and implementing a web-based platform for facilitating the information management of members of the Rare Diseases community.

Why Rare Diseases ?

Rare diseases are defined as those who afflict populations of less than 200,000 patients, or about 1 in 1,500 people.

There are, however, about 7,000 rare diseases.

The patients affected by them, and their families, struggle due to the lack of information and general knowledge on the nature and treatment for these afflictions.

• It takes in average 7.5 years for a patient to get a correct diagnosis for a rare disease, 
• After having seen and average of 8 doctors . 

By then, these patients have been treated for a variety of incorrect diagnosis and have missed the proper treatment for their case.

Most rare diseases are genetic, and thus are present throughout the person’s entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday.

The Hackathon event is coordinated in collaboration with Ed Fennell, who is driving the Forum on Rare Diseases at the Albany Medical Center.

Here is a recent talk by Ed Fennel at the Rensselaer Center for Open Source.

Logistics

The Hackathon will take place 

• Saturday September 14th
• From 9:00am to 5:00pm
• SUNY Albany Campus (Map here in PDF)
• Humanities Building (building 11 in the map, in sector E8)
• Google Map here:  
• Room: HU 109
• Pizza lunch included (Thank you SUNY Albany ASIS&T Student Chapter)

If you are in the Albany area, join us to apply Open Source to things that Matter !