For small patient groups, creating momentum towards rare disease solutions often seems futile.
To tackle such expensive and extensive endeavors, rare communities find strength and hope by putting their minds together in collaboration. No rare patient can do it alone. Patients and parents quickly become advocates and experts when they realize they will only get solutions by dedicating their personal drive to the collaborative effort of their disease research.
As reported in a press release by The Linux Foundation, the Linux Foundation and OpenTreatments Foundation are using their collaborate software to search for answers by way of gene therapies, inviting the input of the masses. Now, they’ve launched the RareCamp software project to bring together the minds of rare diseases with the wide net of the web to collaborate. The novel open source software invites the community to partake in the effort towards rare treatment options, giving patients the source code to create gene therapies.
Two Companies Collaborate
The Linux Foundation is a nonprofit that uses the collaboration of the masses to create open source software, inviting the greater scientific community and developers to contribute to the development of software that fuels rare treatment creation.
OpenTreatments Foundation also creates a software platform to aid the rare disease discovery toolkit. The non-profit uses a decentralized software platform, OpenTreatments, to contribute to treatments for all rare genetic diseases, utilizing input from patients and those interested.
The collaborators are eager to see their open source model show the great potential of melding open source collaboration and tech. The rare disease community is full of uniquely motivated patients and family members who are eager to do whatever it takes to get rare answers.
Like many contributors to the rare community, the creator of RareCamp, Sanath Kumar Ramesh, has a personal connection to rare disease.
RareCamp contributor and Vendia software engineer Brett Andrews says:
“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. Contributing to this project was an easy decision.”
The New RareCamp Software
The RareCamp software joins a movement that considers a more holistic range of perspectives and takes a patient centric approach.
Ramesh said,
“OpenTreatments and RareCamp decentralize drug development and empowers patients, families, and other motivated individuals to create treatments for diseases they care about.”
The open source community mainly consists of tech savvy experts, including various types of scientists, software engineers, content writers, and UX designers, to work on the software using a mix of coding sources on JavaScript’s NextJS and Amazon’s Serverless stack.
“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
Creating the right platform for sharing ideas clicks the community into a mind bigger than their own. As Mike Dolan, executive vice president of The Linux Foundation puts it:
“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.”
