DysNet is run by EDRIC (European Dysmelia Reference Information Centre), an organisation set up by a group of thalidomiders from across Europe.
In common with other rare diseases, people born with the variety of conditions that come under the generic title 'dysmelia' - limb and internal damage - experience profound health inequalities.
As an inclusive organisation, we'd like to bring ALL these groups together so that a wider section of the dysmelia community across the world can find the information and support that they need.
The network will strengthen and build central infrastructures: centres of expertise (CEs) - like the Ex-Center in Stockholm - that carry out procedures or make know-how available to affiliated, less specialised health service providers and develop best standards and dissemination tools like e-health and tele-medicine.
The internet has made the world a much smaller place. Now, people from a wide geographical area who have similar interests, can link up and share support and experiences. But while our research has shown that in some countries, such as the US and Germany, there are a number of small and thriving support groups for, primarily, parents of children with limb differences, adults and dysmelic people in other countries are not as well served.
Aims and Objectives
EDRIC's core project for 2012-2017 is the development of a highly innovative, three-level peer-expert reference network architecture to support a patient benefit value chain.
The first step was the launch of the Dysmelia Network (DysNet) - a peer-support community - which went live in 2012; an online repository for information about dysmelia - the Dysmelia Knowledge Base (DKB) - was launched at the same time.
The next step is the creation of the Dysmelia Expert Forum (DEF) - an expert network - to be launched in 2014 and fully implemented in 2015; following this, a rare disease European reference network (DysERN) for birth defects and limb deficiency conditions which is scheduled for 2015-2017.
The DysNet and DEF projects are a way to share and preserve the knowledge that people living with dysmelia have gained over the years, that has enabled them not only to lead independent lives but, in many cases, to achieve things that most non-disabled people would find difficult.
The supporting activities of patient benefit value chains are centred upon DysNet and DEF: this involves peer-support, information exchange, networking, communication, identification of unmet needs, R&D, and ongoing quality management.
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- Rare Disease Day 2015 - Comunicato Stampa IT
- Rare Disease Day 2015 - Pressemitteilung DE
- Rare Disease Day 2015 - Press Release EN
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