The GNC is delighted to announce that Professor Eva Billstedt has been awarded 400,000 Swedish Krona per year for three years for her research on adults with rare disorders – psychiatric comorbidity, cognitive function, and quality of life.
Individual rare disorders are defined, among other things, by their prevalence in the population being fewer than 1 in 2,000. However, there are many hundreds of such diagnoses related to the nervous system and its development, and together they affect at least 2% of the entire population. In many cases, individuals with these conditions not only experience specific physical symptoms related to their diagnosis but also psychiatric or developmental difficulties.
The current project examines the prevalence of psychiatric comorbidity, adaptive and cognitive function, and aspects of quality of life in four such rare diagnoses (22q11 deletion syndrome, Silver-Russell syndrome, Prader-Willi syndrome, and autism with a known medical cause). The aim is to increase understanding of what it is like to live with these conditions (for both the individual and their family) so that tailored interventions and care can be provided in the best possible way.
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