Share4Rare is a new platform that moves patients centre-stage and opens new opportunities for patient engagement. The online platform is currently in development in partnership with The Synergist – the organisation that host PFMD – and will go live early in 2019.

As part of the development process, three separate workshops will be held to help us better understand patient and clinician needs and requirements. The first workshop already took place on March 23rd. Insights gathered will serve to feed the design and development team as we get ready for launch.