Fifth Rare Diseases Hackathon at Zone 5 Albany

The Fifth Hackathon for Rare Diseases will take place on Saturday February 22nd at the offices of Zone 5 in downtown Albany.

This is a follow up of the Fourth Hackathon for Rare Diseases that took place on December 7th.

The goal of the Hackathon is to  continue implementing the prototype of 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.

 

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.

This year's Forum on Rare Diseases will take place on February 26th (four days after the hackathon).

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

Ed Fennel also delivered a talk, raising awareness about Rare Diseases, at TEDxAlbany on November 14th.

 

Logistics

The Hackathon will take place

  • Saturday February 22nd
  • From 10:00am to 5:00pm
  • Zone 5 offices. Map here.
    • Thanks to Zone 5 for kindly hosting the event.
  • Refreshments will be included.

 

Mentors will include: Kitware developers, SUNY Albany Faculty, SUNY Albany Students, SUNY Albany ASIS&T (Association for Information Science & Technology) Student Chapter, RPI Students from the Rensselaer Center for Open Source (RCOS), Skidmore College GIS Center for Interdisciplinary Research staff/students.

Software developed during the Hackathon will be uploaded to the Emily and Haley organization in Github

 

The event is open to ALL,

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

 

To register go to this link http://goo.gl/DfkXEw

Questions or comments are always welcome!