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Björn Håkansson, our friend and Dysnet Board Member, passed away! He was a visionary, strong character, fighter and one of the founders of DysNet/EDRIC. He always had great ideas and was a successful negotiator.

For many people he was a role model. Living with his disability didn’t mean to accept limits. He tried everything he wanted (tennis, golf, skiing, boxing,…).

His initiatives, combat power, commitment, instinct, smart brain, strength, knowledge and fire for Thalidomide and DysNet/EDRIC where known worldwide. He connected Thalidomide survivors and people with Dysmelia from all over the world. He was a bridge builder and impressive person.

We are deeply saddened and will miss this great man and proud Viking.

Our thoughts are with his wife and daughter.

RIP - the Board - 1 december 2022

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DysNet is the global network connecting anyone who is personally or professionally affected by congenital limb deficiency.  The site is inclusive, communicative and collaborative.  This is the place where you can find information, contribute your own thoughts and ideas and join the conversation.


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.


We are developing a network of experts - the Dysmelia Expert Forum - who can help answer any questions you might have about dysmelia or living with limb loss.  When you join our community, you will get the opportunity to have your medical or practical questions answered by experts in the field.


Help us to develop a strong global voice for dysmelia.  As an individual you can register on the DysNet website - the place to access information - and the multi-lingual DysNet RareConnect community - a safe, moderated space to connect with your peers.  As an organisation, you can join DysNet.

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