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Many individuals with dysmelia, along with their families and support groups across the world, have made discoveries about great resources, adaptations and medical treatments to help themselves, their children or their patients in managing their condition.DysNet wants to bring all that knowledge together in an accessible database so that everyone who needs to find out this type of information doesn't have to spend hours searching. Why reinvent the wheel over and over, when someone in a similar position somewhere else in the world can offer a solution?
We've also launched a community forum on RareConnect that is a safe, moderated environment to share experiences, knowledge and ideas with other people in your position across the globe.
If we haven't yet made contact with you or your group or organisation - don't wait!, [CONTACT] now and join the DysNet global community! Although we were established to assist people with congenital loss, we also welcome those who have lost limbs through amputation as a result of illness or trauma.
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. MORE
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.
DysNet’s Chair Claudio Pirola interviews Paralympic Swimming Champion Alberto Amodeo. Born in 2001 at the age of 12 Alberto lost his right leg and suffered from severe injuries to his right arm due to an accident. A dialogue about expectations, determination, efforts, dreams, success. Many thanks Alberto for telling us your experience! We wish you all the best for your future!
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