The OrphaDev4Kids project, focused on advancing medical devices development for rare diseases in children, will officially launch with a kick-off meeting on 19 July 2024 in Bari, Italy. This event brings together the project partners to align on objectives and map out the key activities.

Under the moderation of Donato Bonifazi, CEO of CVBF, the meeting will feature presentations covering the various aspects of this multi-stakeholder initiative supported by the European Commission.

The five work packages at the heart of OrphaDev4Kids will be discussed by the respective partner organizations.

Project management, coordination, and strategies for engaging children/young patients will be outlined, while will be also discussed service access, tools management, IT systems, and regulatory/ethical guidance.

A focal point will be the three case studies that exemplify the project’s aims:

1) A wearable biosensor for congenital heart diseases in children.

2) A non-invasive cardiac assessment device for tetralogy of Fallot.

3) A resorbable implant for osteogenesis imperfecta.

“We are thrilled to formally commence this crucial project addressing key unmet needs for rare disease therapies in paediatrics,” stated Donato Bonifazi. “The kick-off allows us to synchronize our multidisciplinary efforts towards solutions that transform children’s lives.”

By bringing diverse stakeholders together from the outset, OrphaDev4Kids aims to collaborate effectively in overcoming barriers and driving innovative rare disease therapeutic development.