Third Hackathon on Rare Diseases - Rensselaer Polytechnic - Albany November 16th

The Third Hackathon for Rare Diseases will take place on Saturday November 16th at the campus of the Rensselaer Polytechnic Institute.

This is a follow up of the Second Hackathon for Rare Diseases that took place on October 26th at SUNY Albany.

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.



The Hackathon will take place 

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


Broad applicability

Jenny Jensen's picture

It is important to note that, although each individual rare disease makes a minor impact on most of the rest of us, the aggregate numbers of people with rare diseases is significant and have a major impact on the cost of healthcare. Also, any tools created to help individuals with unexplained, baffling, and/or shifting symptomology are applicable for people with less rare conditions, like Lyme disease, or unusual comorbid conditions that make diagnoses difficult.

Another aspect is that this initiative could result in the creation of a 'zebra zoo,' a single place for both sufferers and their care givers to look for answers to stubbornly undiagnosed medical problems. As all of us in the IT industry are aware, more information is always better than less, but having it organized for ease of search and comparison makes it more useful than if each person has to reinvent the wheel.