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DysNet former EDRIC (European Dysmelia Reference Information Centre) is registered in Sweden as a Non-Governmental Organisation (NGO) under Swedish Law. Date of Registration 7th January 2009.
Registration Number: 802444-3015.
DysNet was developed as a result of collaboration between Föreningen för de Neurosedynskadade (FfdN) from Sweden, the innovative Ex-Center, also from Sweden, and the Thalidomide Trust from the UK. It builds on the successful work carried out in their respective nations. These bodies have been actively supporting people with dysmelia for more than 30 years with access to specialist medical expertise.
DysNet was created to find solutions to the complex needs of members of the UK and Swedish thalidomide groups which were becoming more evident as a result of the effects of premature ageing. DysNet's vision is based on experience that shows information about dysmelia needs to be networked internationally in order to provide effective support on a local level because no single nation possesses adequate knowledge and capacity to deal effectively with the needs of this group.
DysNet is governed by a Board of Directors: two from Italy, one from Sweden, one from Austria and one from Germany. Three of the board members have lived experience of dysmelia while the two are parents of a dysmelic child.
Since the launch of the DysNet webportal in May 2012, DysNet's member-base has been rapidly expanding, which means that our increased breadth of experience is fast becoming a powerful force for improving the lives of anyone who lives with a limb deficiency, whether congenital or as a result of trauma or illness.
This is important because together our voice is stronger and we can work collaboratively across borders to tackle inequalities, lack of access to resources and share information about medical expertise.
It is also empowering to be part of a larger whole and we are keen to be as inclusive and representative as possible.
If you are a registered organisation that represents people with limb difference of any sort, anywhere in the world and would like to become an DysNet member, please get in touch.
The Benefits of membership include:
Giving your members access to the widest possible network of others with similar conditions
Access to expert knowledge about limb difference conditions
Participation in the running of DysNet. Organisational members of DysNet have voting rights and can help to influence the organisation's future direction
Dysnet members benefit for example from subsidised access to our international conferences
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