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

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

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.

 During the hackathon, 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. 

What we did

 The Civic Hackers worked on adding features to the Ruby / Rails prototype application, particularly towards the user profile pages, and towards the interface for reporting symptom occurrences.  Work was also done on adding definitions of symptoms from the orphanet datasets

Commitment

Many thanks to Stephen Perkins (from RPI) for blazing the trail of the prototype in advance to the hackathon, and bravely showing up to the event, despite being in need of an emergency dentist (That is Commitment !). 

Image Gallery

 

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

 

 The follow up Fourth Hackathon on Rare Diseases has been scheduled for Saturday December 7th. It will be held at the Rensselaer Polytechnic Institute campus. Please join us for this energizing community event.  

Patient Centered Care Working Group - Nov 27th

 The  OSEHRA Patient Centered Care and Portability Working Group will be hosting Ed Fennel on the November 27th meeting. Please join us to learn more about how we can build synergies among the many organizations and individuals who have a stake in improving the conditions of patients with rare diseases.   

TEDxAlbany

 Ed Fennell also gave a talk on "The Lives of Zebras" at TEDxAlbany on November 14th. Video of the talk should be available soon. 

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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