Welcome - DysNet Community

What is DysNet ?

Dysmelia is the generic term for all types of congenital limb differences - genetic, environmentally-induced or caused by an isolated fetal development problem. It is a rare condition with varying degrees and types of congenital limb damage and affects about 5 people in every 10,000.

Source: Participating patient organizations visible below

DysNet Resources

More members stories

Latest Member Stories

Emilien and Amniotic Band Syndrome

by nfourrier published 2 months ago
One comment

The condition was revealed in Emilien during the fifth month morphology ultrasound scan. That was also the day that our lives were turned upside do...

My son's Poland Syndrome story

by sampipuk published 8 months ago
One comment

It was during this stay in hospital that I discovered that my beautiful bundle of joy had two fingers that were joined together.  To say I was hear...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.