Second Rare Diseases Hackathon at SUNY Albany

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

This is a follow up of the First Hackathon for Rare Diseases that took place on September 14th.

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.

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

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

Logistics

The Hackathon will take place

• Saturday October 26th
• 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
• Refreshments will be included.

The event is open to ALL,
If you are in the Albany area, join us to apply Open Source to things that Matter !