At an international and global level, different manifestos are formulated for the achievement of inclusive quality education, from the Declaration of Salamanca (UNESCO, 1994) to the 2030 Agenda. The latter establishes the Sustainable Development Goals, specifically the 4th, according to which education must contribute to improving the quality of people’s life, their environment, and the global community (ONU, 2015). This global context of education directly affects the local, determined, and concrete contexts such as schools. In this light and considering the local specifications of the Basque educational system (Gaintza et al., 2020), the inclusion of students with rare diseases (RD) in Basque schools is analysed. Moreover, from the perspective of educational professionals, this study aims to identify inclusive good practices with students with RD and thus provide keys to build a fairer and more equitable world.

In recent decades, research on RD in the biomedical field has increased considerably (Batshaw et al., 2014). Accordingly, RD are known to be a group of about 7,000 disorders characterized by a prevalence of less than 5 per 10,000, affecting around 350 million people worldwide (Fagnan et al., 2015; von der Schulenburg & Frank, 2015). In the school context, despite there is little or very little research in this regard (Darretxe, et al., 2017), it is possible to affirm that the prevalence of these diseases increases significantly throughout the school stage (Lin et al., 2013). A first approach to this context is carried out by the INKLUNI research group of the University of the Basque Country (UPV/EHU), in collaboration with other Spanish universities (Monzón et al., 2017). The results collected in the Basque Country in relation to the educational context concluded that the responsibility of attending students with RD is borne not only by the teacher (tutor), but also from all the professionals and agents that interrelate at school and should coordinate efforts together with the teachers (Gaintza et al., 2018).

The research presented here aims to identify inclusive good practices developed in relation to students with RD in the school context of the Basque Country through the voices of professionals and families. Focusing on the definition of good practices, we find coincident interpretations in the scientific literature (Gradaílle & Caballo, 2016; Muntaner et al., 2016; UNESCO, 2017). Based on these, inclusive good educational practices are understood as those practices that are innovative, creative, and sustainable over time, can be systematized to other environments, that promote collaborative and network work, promoting the presence, participation and achievement of all students and helping to improve their quality of life.

This research is financed by the competitive call for University and Society Projects of the University of the Basque Country (2018-2020_US18/33). The project is entitled "Systematization of Inclusive Good Practices in the educational response to students with Rare Diseases". Its purpose is to collect, analyse and systematize inclusive good educational practices through the voices of education professionals in the different Autonomous Communities of the Spanish State, to provide a successful educational response to the needs of students with RD during their schooling.

The methodology used is qualitative in nature through a multiple case study (Stake, 1998). The information collection instrument is the in-depth interview that follows an ad hoc design adapting the Themis (Azorín, 2018). This research has a favourable verdict from the Ethics Committee of the UPV/EHU and is carried out in 10 autonomous communities of the Spanish context. However, only the data from the Basque Country are presented here. The cases analysed consist of two students with RD: a) a 4-year-old boy (Infant Education) diagnosed with Charcot Marie Tooth and Hypotonia; and b) a 10-year-old boy (5th grade of Primary Education) diagnosed with Hallermann-Streiff Syndrome. A total of 13 professionals from the school environment and 3 relatives participated in the interviews. The group of professionals included: therapeutic pedagogy teachers; speech therapist; occupational therapist; educational support specialist, professional from the blindness resource centre. The data were analysed with Nvivo 12 Release. Taking the Themis as a reference (Azorín, 2018), good inclusive practices are identified according to three main categories: (1) Educational contexts: School centres involved and committed to educational improvement and innovation participate in plans and projects. In these centres, an inclusive leadership has been woven and horizontal relationships are promoted, considering these two aspects being favoured by the small size of these centres. The tutor teaching staffs holds regular coordination meetings already established with other teachers and professionals. Sometimes, the family also participates, and even students with RD. Thus, the relationship between the teaching staff and these students is close so, the knowing about them is continuous and constant. (2) Resources: Teacher´s continuous training is considered a must to promote, together with other human, material and community resources. Among human resources, the presence of two teachers in certain sessions and the weight of the educational support specialist stand out. In addition, there are external professionals working in coordination with centres and families. Material adjusted to the needs of the student was observed in both cases. They are open centers with a range of community services working in co-operation. (3) Inclusive processes: To believe in the abilities of all students leads to promote equal opportunities through ensuring their presence, participation, and achievement. For that purpose, these students are schooled in the mainstream classroom and participate together with their peers in previously adapted activities. Inclusive processes involve flexible methodologies that promote work in heterogeneous groups, cooperative groups, or peer learning.

From this local and concrete experience, it is concluded that guarantying the presence of student with RD together with their peers in the mainstream classroom is essential for the development of inclusive good practices. In this scenario, it has been possible to determine good practices that promote quality education for students with RD: (1) pro-inclusion work from the centre's management that affects all its components; (2) an open school equipped with the necessary resources, highlighting the presence of the educational support specialist, and; (3) collaborative work that foster the transformation of classrooms into inclusive spaces, where the methodology and resources used guarantee the presence and success of all students. In other words, in the daily work for attention to diversity in general and in particular to students with RD, nothing is left to chance. This path towards the utopia of full inclusion involves creating opportunities for training, coordination between teachers and the entire educational community, planning in the short, medium and long term and, ultimately, the adaptation of the context and the teaching methods to the needs of students who present RD. The ultimate goal of all this is to advance the right to quality education for children with RD, and thus achieve the fourth Sustainable Development Goal of the 2030 Agenda. Like any local experience, results are circumscribed to the study of a specific reality, which limits the transferability of the results to other contexts. More research is required on the subject of students with RD in order to take small steps from specific local realities and advance along the path of inclusive education in a global scenario.

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