[ about the network ]
The Complex Communication Needs and Minority Diseases Thematic Network (NECCO-ENMI) aims to bring together a group of researchers and practitioners who address the complex communication needs of people with rare diseases or minority diseases with Intellectual Disabilities.
NCCs occur when people are unable to communicate through the usual channels of communication (spoken, written, signed), forcing them to use Augmentative and Alternative Communication (AAC) systems to carry out communication exchanges.
But sometimes deciding which system is the most suitable is a difficult task. Before making this choice, the communicative-linguistic profile of the target population should be determined. The AAC modality that best suits people with minority illnesses and CKD should then be chosen in order to improve functional communicative competence.
There are few papers that address these NCC issues in Minority Diseases, hence the need to combine synergies from different theoretical fields (psychology, speech therapy, computer engineering) as well as from professional or family groups (association of relatives of people with minority diseases and NCC).
This thematic network proposal arises from a previous European Project of the Erasmus Plus Call called: EC+ Enhancing Communication: Research to improve communication for People with Special needs and development of ICT (KA2 Cooperation for innovation and the exchange of good practices).
[ Fulfil our questionnaire here! ]
[ Also in Spanish and German! ]
[ objectives ]
Among the aims of this network will be:
Group of experts
Firstly, to generate a group of experts (researchers and professionals from different fields) to provide valid information on the approach of NCCs in this population (minority diseases with intellectual disabilities) from a multidisciplinary perspective (geneticists, psychologists, speech therapists, computer scientists).
Activities
Plan joint actions such as work meetings and exchange of experiences, both face-to-face and virtual, by videoconference or webinars.
Profile analysis
To determine the communicative and linguistic profiles of the population with minority illnesses and Intellectual Disabilities.
Use TIC tools
Use existing tools (such as the EC+ app, developed in the framework of a European project led by the University of Malaga).
New methodologies and tools
Design new methodologies and new tools, in order to contribute to the advancement of knowledge and achieve the dissemination of the tool among professional groups.
New protocols of action
Elaborate new protocols of action in the field of communication in population with minority diseases.
