( Photo: Mr Leid Zejnilovic at extreme left and Prof Pedro at extreme right, both of Patient Innovation Project at KL, 7 Dec 2013. )
We are pleased to announce that MRDS is a partner association of the Patient Innovation Project. The Patient Innovation Project is an online, free of charge, web platform for rare disease patients and caregivers to share solutions they themselves have created to make daily life easier.
MRDS was fortunate to meet Prof Pedro Oliveira from the Portuguese Catholic University who is spearheading the Patient Innovation Project. Each rare disease has a webpage where patients can share how they do or use things that help them to function better or to be more comfortable. I have seen an OI patient moving around on a skateboard using a clothes hanger to open door handles. I have met Anthony with fragile bones who had a special bar made over his bed with straps to support his fragile hips. Please check out the website below and see what solutions you can share. You only need to register.
For more information about the Patient Innovation project, please click: