Abstract:

Introduction:
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 who have an intellectual disability.
CCNs occur when people are unable to communicate through the usual channels of communication (spoken, written, signed), forcing them to resort to 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 such a choice, the communicative-linguistic profile of the population under study should be determined. Then, the AAC modality that best suits target population must be chosen, in order to improve functional communicative competence.

Background:
There are few works that address these CCN issues in Minority Diseases, hence the need to combine synergies from different theoretical fields (psychology, speech therapy, computer engineering) as well as those from professional or family groups (association of relatives of people with minority diseases and with CCN).
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).

Aims:
The aims of the present network are:
a) To generate a group of experts (researchers and professionals from different fields) to provide valid information about the approach of the CCN in this population (minority diseases with intellectual disabilities) from a multidisciplinary perspective (geneticists, psychologists, speech therapists, computer scientists).
b) To plan joint actions such as work meetings and exchange of experiences, both in person and virtually, by videoconference or webinars.
c) To determine the communicative and linguistic profiles of the population target.
d) To 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.
e) To develop new action protocols for communication in populations with minority diseases.

Results:
Professionals from various fields (National and International Universities, National and International Specialist Care Centres) from different professions (doctors, psychologists, speech therapists, translators and interpreters) have come together in the network (necco.uma.es)
Two surveys have been carried out (one in Spanish and one in English) with the aim of identifying the communication profiles of people with CCN and minority diseases. They address issues such as diagnosis, age, nationality together with the specific questions about communication habits, problems, communicative intention, performance, use of particular tools among others.
From the surveys collected by researchers and associations we have identified the communicative profiles of people with CCN and minority diseases, and we are developing ICT tools in line with previous research (Chicano, Postigo, Luque y Calleja, 2018) to enhance the performance of these subjects and to match and respond to their needs.

Keywords:

Complex Communication Needs, minority diseases, protocol for communication, ITC tools.