First Hackathon on Rare Diseases - SUNY Albany Sept 14 - Report
The goal of the Hackathon was to start designing and implementing a web-based platform for facilitating the information management of members of the Rare Diseases community.
The Hackathon event was coordinated by the SUNY Albany ASIS&T Student Chapter, in collaboration with Ed Fennell, who is driving the Forum on Rare Diseases at the Albany Medical Center.
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 25 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, Skidmore College, as well as local enthusiastic community members.
[Images courtesy of James Weiss and Luis Ibanez]
The enthusiastic group got introduced to the specific needs of the Rare Diseases communities, and participated in engaging conversations that intertwined: databases and user interface design with the practical realities of caregivers, and their challenges.
The follow up Second Hackathon on Rare Diseases has been scheduled for Saturday October 26th, and will also be held at the State University of New York at Albany. 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.