Second Hackathon on Rare Diseases - SUNY Albany October 26 - Report

The Second Hackathon on Rare Diseases took place on Saturday October 26th at the campus of the State University of New York at Albany.

The goal of the Hackathon was to work together on a web-based platform for facilitating the information management of members of the Rare Diseases community.

A first pass at the prototype is currently available here in Github, under the Apache 2.0 License.

The Hackathon event was coordinated by the SUNY Albany ASIS&T Student Chapter, and students from Rensselaer Polytechnic, in collaboration with Ed Fennell, who is driving the Forum on Rare Diseases at the Albany Medical Center.

 

Hackathons are the most important activity to unleash the efficiency of peer-production through unmanagement practices.

 

It is only when we are hosting hackathons on a regular basis,
that we are doing true Open Source development.

 

The Hackathon was attended by 11 participants, including OSEHRA staff, Kitware developers, SUNY Albany Faculty, SUNY Albany Students, SUNY Albany ASIS&T Student Chapter, RPI Students from the Rensselaer Center for Open Source, as well as local enthusiastic community members.  During it, the participants were able to take advantage of servers in the Amazon EC2 cloud, thanks to an Academic Grant that Amazon kindly provided to SUNY Albany. The Civic Hackers worked in replicating an installation of Ruby / Rails, and testing the login front end of the web-enabled application.  Many thanks to Stephen Perkins (from RPI) for blazing the trail of the prototype in advance to the hackathon, and then guiding the group on the process of installation and configuration.  

[Images courtesy of Catherine Dumas and Luis Ibanez, under CC BY License]

 

 The follow up Third Hackathon on Rare Diseases has been scheduled for Saturday November 16th. This time, it will be held at the Rensselaer Polytechnic Institute campus. Please join us for this energizing community event.   

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.

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