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.
Most Recent Posts
15 Most Recent Posts
- DysNet Weekly 7th March
- DysNet Weekly 28th February
- DysNet Weekly 21st February 2014
- Rare Disease Day - 28th February 2014
- DysNet Weekly 14th February
- Appello ai volontari per aiutare con studio accademico
- DysNet Weekly 7th February 2014
- Amazing Amputee Football video
- Appel à bénévoles pour aider avec les études universitaires
- Call for volunteers to help with academic study
- DysNet Weekly 31st January 2014
- DysNet Weekly 24th January
- DysNet Weekly 17th January 2014
- Urgent request: clinical pictures and x-rays for scientific publication
- Patients Know Best Enables European-Wide Specialist Care Access For Rare Disease Patients