Pułapki (nie)dostępności – muzeum w dobie nowoczesnych technologii. Na przykładzie Muzeum Narodowego w Krakowie

Muzeum pełni ważną rolę edukacyjną, dostarczając wiedzy i informacji w trakcie zwiedzania kolekcji muzealnych. Stanowi również przestrzeń dla spotkań ludzi, którzy mając podobne zainteresowania przyczyniają się do budowania sieci społecznych i kapitału kulturowego. Dziś muzeum, jak każda instytucja, stanęła wobec nowych wyzwań w obliczu pojawienia się nowoczesnych technologii, które z jednej strony otwierają się na osoby z różnymi rodzajami niepełnosprawności, a z drugiej stanowią nowy powód wykluczenia tych, dla których te technologie nie są dostępne. Przepisy prawa narzuciły podmiotom publicznym konieczność dostosowania rozwiązań cyfrowych do standardów dostępności dla osób z niepełnosprawnościami. To sprawia, że dziś w ofercie muzealnej coraz częściej możemy zobaczyć wirtualne kolekcje i/lub inne nowoczesne rozwiązania opracowane na podstawie współczesnych technologii, ułatwiające zwiedzanie. Nasz artykuł pokazuje, jak osoby z niepełnosprawnościami oceniają rozwiązania wprowadzone w Muzeum Książąt Czartoryskich w Krakowie, ułatwiające dostępność kolekcji. Przeprowadzone wywiady pozwoliły ocenić, jakie działania ze strony muzeum są najbardziej cenione przez badane osoby z niepełnosprawnościami, skąd czerpią wiedzę na temat kolekcji oraz jaki potencjał widzą w nowych technologiach.The museum plays an important educational role, providing knowledge and information while visiting museum collections. It is also a meeting space for people who have similar interests, contributing to building their networks and cultural capital. Today, the museum, like every cultural institution, has faced new challenges in the face of the emergence of modern technologies, which on the one hand open the museum to people with various types of disabilities, and on the other, constitute a new reason for excluding those for whom these technologies are not available. The law has imposed on public entities, including the museum, the need to adapt digital solutions to the standards of accessibility for people with disabilities. This means that today the museum offer more often includes virtual tours or solutions based on modern technologies that facilitate sightseeing. Our article shows how people with disabilities evaluate the solutions that facilitate accessibility introduced at the Princes Czartoryski Museum in Krakow. The interviews allowed to recreate the activities of the museum are most appreciated by the respondents with disabilities, from where they learn about the collection and what potential they see in new technologies used in museums to advertise events and / or share the collection

Disease specific knowledge about cystic fibrosis, patient education and counselling in Poland

introduction and objective. The presented study assesses levels of specific knowledge of the disease among cystic fibrosis (CF) patients and their families, and evaluates the effectiveness of a targeted, disease specific education programme. materials and methods. A cross-sectional survey among 462 families with a CF child evaluated their knowledge of the disease. A one year follow up survey among 200 families assessed the effectiveness of an educational programme developed to correct gaps, errors and misconceptions identified in the previously administered survey. Self-administered, comprehensive, 5-domains, 45-item multiple-choice CF Disease Knowledge Questionnaire (CFDKQ) was anonymously completed by 462 subjects. results. 228 respondents were male (49%), 234 female (51%). The level of disease-specific knowledge in the age groups 0–6 and 7–10 years, was significantly higher than in 11–14 and 15–18 years of age groups (p<0.005). General medical and Genetics/Reproduction knowledge was low in all patients. Significant predictors of patient and parental knowledge were age and domicile. Patients and parents rely heavily on doctors for information about CF (77%). The follow-up survey (CFDKQ) emphasized that special education programmes significantly improved levels of disease specific knowledge (p<0.0001). conclusions. If left uncorrected, the misconceptions, gaps and errors in CF knowledge identified in the presented study could result in inadvertent non-adherence to treatment, and impact on the progression and outcome of the disease. Secondly, the results demonstrate the effectiveness of targeted, disease specific information in improving disease knowledge of CF patients and their families, and highlights the value and need for the development of educational programmes for chronically ill patients and their families

How to make Museums Autism-friendly. The Erasmus+ Spektrum Project

The present paper aims to present the Spektrum project (Erasmus+ Youth. Action 2 - Strategic Partnerships) as good practice of transverse skills promotion among museum users with Autism Spectrum Disorders. The project, coordinated by the National Museum in Krakow (Poland), involves cultural organizations and research centres from Great Britain, Italy, Spain and Belgium, partners with rich and long-standing experience working with people with ASD. The project includes an analysis of the current edu- cational offer and accessibility level of cultural institutions in the partners’ countries and an exchange of good practices among European institutions. The partnership seeks the inspiration to develop new solutions and activities dedi- cated to the young audience on the autism spectrum and their families. Two years of cooperation (2020-2022) aim at creating strategic project resources and tools for museums to become more autism-friendly. The important feature is training for museum staff tailored to the needs of the cultural institutions, sensitizing to the needs of people with ASD

Secretory leukocyte protease inhibitor regulates nerve reflex-mediated skin barrier function in psoriasis

BACKGROUND: Secretory leukocyte protease inhibitor (SLPI), a ~12 kDa protein is an important regulator of innate and adaptive immunity and a component of tissue regenerative programmes. SLPI expression is markedly elevated in chronically inflamed skin, including that of individuals suffering from psoriasis. However, the role of SLPI in these diseases remains elusive. OBJECTIVES: The poor understanding of the early stages of the development of psoriasis is a major obstacle to successful intervention in the skin pathology. We hypothesized that SLPI and peripheral nerves that might be activated early in the progression of the disease likely form a functional relationship to maintain skin barrier homeostasis and respond to a variety of threats. METHODS: We used skin biopsies of healthy donors and individuals with psoriasis to show expression pattern of SLPI. A role of SLPI in psoriasis was mechanistically assessed using SLPI‐deficient mice and an imiquimod (IMQ)‐induced experimental model of psoriasis. RESULTS: We show that mice lacking SLPI had exaggerated skin alterations that extended beyond the treatment site in an imiquimod‐induced psoriasis. The spatiotemporally distinct skin responses in SLPI‐deficient mice, compared to their wild‐type littermates, resulted from a compromised skin barrier function that manifested itself in heightened transepidermal water loss through the larger skin area surrounding the IMQ‐challenged skin. The increased pathogenic skin changes in the absence of SLPI were reversible through pharmacological treatment that blocks a nerve‐reflex arc. CONCLUSIONS: Together, these data indicate that SLPI plays a protective role in psoriasis through preventing skin dryness, inherent in the pathogenesis of psoriasis and that this SLPI action depends on neuronal input operating in a reflex manner. These findings reveal a previously unrecognized mechanism that maintains cutaneous homeostasis, which involves a crosstalk between the nervous system and a protein anatomically poised to fortify the epidermal permeability barrier

Cystic fibrosis is a risk factor for celiac disease

Background: The coexistence of cystic fibrosis (CF) and celiac disease (CD) has been reported. To our knowledge there is no study directly comparing the incidence of CD in CF patients to that in the general population at the same time. There is no published data on genetic predisposition to CD in CF patients either. Therefore, in the present study we aimed to assess the genetic predisposition to CD and its incidence in CF patients comparing it to data from the general population. Patients and methods: Two hundred eighty-two CF patients were enrolled in the study. In 230 CF patients the genetic predisposition to CD (the presence of HLA-DQ2/ DQ8) was assessed. In all CF patients, serological screening for CD was conducted. In patients with positive antiendomysial antibodies (EMA) gastroduenoscopy was offered. Intestinal histology was classified according to modified Marsh criteria. The results of serological CD screening in 3235 Polish schoolchildren and HLA-DQ typing in 200 healthy subjects (HS) were used for comparison. Results: Positive EMA was found in 2.84% of the studied CF patients. The incidence of proven CD was 2.13%. The incidence of CD as well as positive serological screening were significantly more frequent in the CF group than in the general population. The frequency of CD-related HLA-DQ alleles in CF and HS did not differ. Conclusions: Genetic predisposition to celiac disease in cystic fibrosis patients is similar to that of the general population. However, our results suggest that cystic fibrosis is a risk factor for celiac disease development

Molecular mechanisms of ZC3H12C/Reg-3 biological activity and its involvement in Psoriasis pathology

The members of the ZC3H12/MCPIP/Regnase family of RNases have emerged as important regulators of inflammation. In contrast to Regnase-1, -2 and -4, a thorough characterization of Regnase-3 (Reg-3) has not yet been explored. Here we demonstrate that Reg-3 differs from other family members in terms of NYN/PIN domain features, cellular localization pattern and substrate specificity. Together with Reg-1, the most comprehensively characterized family member, Reg-3 shared IL-6, IER-3 and Reg-1 mRNAs, but not IL-1 beta mRNA, as substrates. In addition, Reg-3 was found to be the only family member which regulates transcript levels of TNF, a cytokine implicated in chronic inflammatory diseases including psoriasis. Previous meta-analysis of genome-wide association studies revealed Reg-3 to be among new psoriasis susceptibility loci. Here we demonstrate that Reg-3 transcript levels are increased in psoriasis patient skin tissue and in an experimental model of psoriasis, supporting the immunomodulatory role of Reg-3 in psoriasis, possibly through degradation of mRNA for TNF and other factors such as Reg-1. On the other hand, Reg-1 was found to destabilize Reg-3 transcripts, suggesting reciprocal regulation between Reg-3 and Reg-1 in the skin. We found that either Reg-1 or Reg-3 were expressed in human keratinocytes in vitro. However, in contrast to robustly upregulated Reg-1 mRNA levels, Reg-3 expression was not affected in the epidermis of psoriasis patients. Taken together, these data suggest that epidermal levels of Reg-3 are negatively regulated by Reg-1 in psoriasis, and that Reg-1 and Reg-3 are both involved in psoriasis pathophysiology through controlling, at least in part different transcripts