A Swedish-registered NGO that was developed as a result of joint work involving the Föreningen för de Neurosedynskadade (Sweden) and the Thalidomide Trust (UK) and builds on the successful work carried out in their own respective nations. Both of these bodies have been actively supporting people with dysmelia for more than 30 years with access to specialist medical expertise in their own nations.
EDRIC was created out the need to find health solutions for the complex needs of the members of these two groups which were becoming more evident as a result of the effects of ageing. It had been discovered that no single nation possessed adequate knowledge and capability to deal effectively with the problems posed by this rare disease despite the high reputation each group had in their own country.
EDRIC is based on the experience that information about dysmelia needs to be networked internationally in order to provide effective support at local level.
EDRIC will offer an EU-wide approach to supporting patients with a specific rare disease and will combine ‘social’ type networks with highly specialised secure information networks, backed by an advanced knowledge repository, taking advantage of highly innovative information systems.
EDRIC will innovate on the levels of international patient group networking, international specialist networking, international network support for the development of new specialist centres, the use of advanced methods and technology to create a virtual knowledge repository, and the creation of patient databases, electronic patient records, and registries.
EDRIC is being developed following seven years of collaborative work mainly involving the EX-Center and the Thalidomide Trust, to meet the specific health needs of dysmelic patients. This has included building an expert panel of the world´s recognised medical experts in the fields of dysmelia and thalidomide damage - i.e. Dr C G Newman (UK); Privat-Dozent Dr J Graf, (Germany); Dr P Kohler (Sweden); Professor (Dr) J McCredie (Australia); Professor (Dr) R Hanspal (UK).
EDRIC offers an innovative solution to support dysmelic patients in a cost-effective way. This approach could be regarded as a pilot project for a method of rare disease management capable of being used by many other rare disease patient groups. It will therefore also serve as a model for the support and treatment of a wide range of other rare diseases.