"About a decade ago, I lost my lovely, barely teenage niece Sarah to a rare
childhood brain cancer. When I first found out, I'd assumed there was surely
some treatment that would give her a chance. There wasn't then, and there isn't
now. It's still a death sentence.
She's far from alone. Many families face the horrors of rare genetic diseases
with no map or plan on how to even mitigate them, never mind cure them. Now, to
help them, The Linux Foundation, the nonprofit open-source organization, and
the OpenTreatments Foundation, which enables treatments for rare genetic
diseases regardless of rarity and geography, announced the RareCamp software
project. This project will provide the source code and open governance for the
OpenTreatments software platform to enable patients to create gene therapies
for rare genetic diseases."
Via Steven Vaughan-Nichols, who wrote "Let’s see if the power of open-source
can lead to cures for rare diseases, which otherwise never get the resources
needed to beat them."
*** Xanni ***
Chief Scientist, Xanadu
Partner, Glass Wings
Manager, Serious Cybernetics