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A new collaboration demonstrates how tech can help understand rare diseases

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The Linux Foundation’s open source software will be used to develop gene therapies for rare genetic diseases in the newly announced RareCamp project.

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Image: iStock/Spectral-Design

Gene therapies for rare genetic diseases is the goal of the newly founded RareCamp software project from the collaboration of The Linux Foundation and the OpenTreatments Foundation. There are 400 million patients worldwide affected by more than 7,000 rare diseases, yet treatments for rare genetic diseases are an underserved area. More than 95% of rare diseases do not have an approved treatment, and new treatments are estimated to cost more than $1 billion.

“OpenTreatments and RareCamp really demonstrate how technology and collaboration can have an impact on human life,” said Brett Andrews, RareCamp contributor and software engineer at Vendia, in the announcement. 

The nonprofit Linux Foundation provides developers with open source software. With this software, software and scientific communities can collaborate and come up with the software tools to help create treatments for rare diseases. 

“OpenTreatments and RareCamp decentralize drug development and empowers patients, families and other motivated individuals to create treatments for diseases they care about,” said Sanath Kumar Ramesh, founder of the OpenTreatments Foundation and creator of RareCamp, also in the announcement.

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“Sanath’s vision is fueled with love for his son, technical savvy and the desire to share what he’s learning with others who can benefit,” said Andrews. “Contributing to this project was an easy decision.”

The RareCamp open source community includes software engineers, UX designers, content writers and scientists who collaborate to build software to power the OpenTreatments’ platform. The project uses the open source JavaScript framework NextJS for the frontend and the Amazon Web Services Serverless stack, including AWS Lambda, Amazon API Gateway and Amazon DynamoDB, to power the backend. The project uses the open source toolchain Serverless Framework to develop and deploy the software. The project is licensed under Apache 2.0 and available for anyone to use.

“If it’s not yet commercially viable to create treatments for rare diseases, we will take this work into our own hands; with open source software and community collaboration is the way we can do it,” Ramesh said.

“OpenTreatments Foundation and RareCamp really represent exactly why open source and collaboration are so powerful, because they allow all of us to do more together than any one of us,” said Mike Dolan, executive vice president and GM of projects at The Linux Foundation. 

Ramesh added, “We will enable the hand off of these therapies to commercial, governmental and philanthropic entities to ensure patients around the world get access to the therapies for the years to come.”

The project is supported by individual contributors, as well as collaborations from companies that include Baylor College of Medicine, Castle IRB, Charles River, Columbus Children’s Foundation, GlobalGenes, Odylia Therapeutics, RARE-X and Turing.com.

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This post was written by and was first posted to TechRepublic



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