The Psychological Counselling Centre for Genetic Rare Diseases, operating since 2019 within the structures of the Institute of Psychology of the University of Gdańsk, conducts scientific research into, among other things, the psychological functioning of people with rare diseases on a genetic basis. In 2020 alone, 150 children with disabilities on a genetic basis were under the care of specialists from the Institute of Psychology at the University of Gdańsk.

The Counselling Centre is an independent unit operating within the structures of the Institute of Psychology of the University of Gdańsk, but it cooperates closely with the Medical University of Gdańsk. It has three goals: scientific, practical and didactic. Among other things, it conducts scientific research on the psychological functioning of people with rare genetic diseases.

- 'The research is often carried out in cooperation with specialist institutions in Poland and abroad. Children regularly attend therapeutic classes in our nursery. We provide them with specialist care, trying to improve their adaptation to the surrounding reality. The clinic is mainly attended by children with genetic syndromes and metabolic diseases, within the framework of cooperation with the Clinic for Rare Diseases at the Medical University of Gdańsk. Patients are provided not only with psychological but also speech therapy. Some of them may also benefit from rehabilitation exercises in the Peto System of Guided Teaching,' - explains dr Arkadiusz Mański, prof. UG, head of the Psychological Clinic for Genetic Rare Diseases at the UG.

The staff of the counselling centre who are also researchers at the Institute of Psychology UG work with the patients. They conduct didactic classes where students can directly get acquainted with the reality of rare diseases. At the same time, some students do their internships in the counselling centre and support the therapeutic process as well as scientific research.

- 'The diagnosis is always pragmatic and, according to the mission of the counselling centre, should serve to improve the quality of functioning of the patients and their families in the community. The result of the diagnosis sets further directions for supporting the child and its parents,' - adds dr Arkadiusz Mański.

In 2020, 150 children with disabilities on genetic grounds (including Down Syndrome, Alkaptonuria, San Filippo disease, Williams syndrome and other so-called rare diseases) were under the care of specialists from the university counselling centre, mgr Paulina Anika-Wiczenbach and dr Arkadiusz Mański. During this period, approximately 730 diagnostic and therapeutic meetings took place in the counselling centre.

As the UG researchers point out, providing multidimensional support for patients with RD (TN: Rare Diseases) is difficult, primarily because of the nature of the conditions themselves.

- 'To learn and understand them, it is extremely important to continuously integrate and update knowledge from many fields (e.g. genetics, molecular biology, medicine, rehabilitation neuropsychology, neurology and rehabilitation psychology, etc.). It seems that such interdisciplinarity and topicality can be achieved at the level of cooperation and collaboration of universities with a profile consistent with the nature of RD,' notes dr. Arkadiusz Mański, prof. UG. - 'In the future, it could be extremely valuable to transform the clinic into an interuniversity unit, but this requires very deep and coherent analysis, especially in terms of the benefits for parents and young patients with rare diseases', he adds.