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Background: Escherichia coli bacteria capable of producing the toxin Stx2e and possessing F18-fimbriae (edema disease E. coli, EDEC) are considered causative agents of porcine oedema disease. This disease, which usually occurs in piglets shortly after weaning, has a high lethality in affected animals and can lead to high economic losses in piglet rearing. The aim of this cross-sectional field study was to determine the prevalence of EDEC in weaned piglets in Germany at pen and farm levels., Results: Ninety-nine farms with unknown history of infections with shigatoxin-producing E. coli (STEC) and oedema disease were sampled. On each farm, up to five pens were selected for sampling (n = 481). The piglets in these pens were at an age 1-3 weeks after weaning. Single faecal samples (n = 2405) and boot swabs (n = 479) were collected from the floor. On 50 farms, cotton ropes were additionally used to collect oral fluid samples (n = 185) and rope wash out samples (n = 231) from the selected pens. All samples were analyzed by bacterial culture combined with a duplex PCR for the presence of the corresponding genes stx2e and fedA (major subunit protein of F18 fimbriae). In addition, whole DNA specimens extracted from boot swabs, oral fluid samples, and rope wash out samples were directly examined by duplex PCR for DNA of stx2e and fedA. A pen was classified as positive if at least one of the samples, regardless of the technique, yielded a positive result in the PCR, and farms were considered positive if at least one pen was classified as positive. Overall, genes stx2e and fedA were found simultaneously in 24.9% (95% CI 22.1-29.1%) of sampled pens and in 37.4% (95% CI 27.9-47.7%) of sampled farms. Regardless of the presence of F18-fimbriae, Escherichia coli encoding for Stx2e (STEC-2e) were found in 35.1% (95% CI 31.0-39.1%) of the pens and 53.5% (95% CI 44.4-63.6%) of the farms sampled., Conclusions: Escherichia coli strains considered capable to cause oedema disease in swine (EDEC) are highly prevalent in the surveyed pig producing farms in Germany. Due to intermittent shedding of EDEC and a potentially low within-farm prevalence, we recommend a combination of different sampling techniques for EDEC monitoring at pen and farm levels. Further studies are needed to understand which STEC-2e strains really pose the risk of causing severe porcine disease., (© 2023. The Author(s).)

People living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact that care systems are not sufficiently aligned with their needs and healthcare workforce (HWF) along their care pathways lacks competencies to efficiently tackle rare disease-specific challenges. Level of rare disease knowledge and awareness among the current and future HWF is insufficient. In recent years, many educational resources on rare diseases have been developed, however, awareness of these resources is still limited and rare disease education is still not sufficiently taken into account by some crucial stakeholders as academia and professional organizations. Therefore, there is a need to fundamentally rethink rare disease education and HWF development across the whole spectrum from students to generalists, specialists and experts, to engage and empower PLWRD, their families and advocates, and to work towards a common coherent and complementary strategy on rare disease education and training in Europe and beyond. Special consideration should be also given to the role of nurse coordinators in care coordination, interprofessional training for integrated multidisciplinary care, patient and family-centered education, opportunities given by digital learning and fostering of social accountability to enforce the focus on socially-vulnerable groups such as PLWRD. The strategy has to be developed and implemented by multiple rare disease education and training providers: universities, medical and nursing schools and their associations, professional organizations, European Reference Networks, patient organizations, other organizations and institutions dedicated to rare diseases and rare cancers, authorities and policy bodies., (© 2022. The Author(s).)

Background: Since it first started operating in 2017, the European Reference Network for Rare Neurological Diseases (ERN-RND) implemented a multi-channel communication strategy to effectively reach its target audience: healthcare professionals, patients, researchers, industry representatives and the general public. We first created a website containing useful and up to date information, followed by social media accounts. Here, the analytical data collected about the ERN-RND website and social media channels was compared (Twitter, Facebook, YouTube) during two periods: October 2018 to September 2019, and the year after the ERN-RND free educational webinars were launched: from October 2019 to September 2020. This allowed us to quantify the impact of offering a tangible product (webinars) on the communication strategy., Results: The analytical data obtained from October 2018 to September 2019 and from October 2019 to September 2020 clearly shows a significant increase in traffic and followers since the launch of the ERN-RND webinars in November 2019. We also created a communication survey which was disseminated between February and June 2021. We collected responses from 61 people: 38 healthcare professionals, 11 scientists, 10 patients (advocates), 2 industry representatives, 1 patient association, 1 charity representative, 1 resident and 1 master student. Most respondents answered "webinars" as the number one reason when asked about which content they look for on the ERN-RND website., Conclusions: Offering a tangible product-such as the webinars presented in this report-to a specific target group (healthcare professionals) supported our communication strategy by driving traffic to ERN-RND communication channels. It has also successfully tackled ERN-RND's general aim: by enabling the flow of knowledge on rare neurological and movement disorders to the medical community in hospitals treating patients with these rare and complex conditions, patients ultimately benefit from improved and faster diagnosis, care, and treatment. We aim to set up similar strategies to effectively reach other or the same target groups. For healthcare professionals, organising eConsultations via the Clinical Patient Management System or disseminating standards of care such as diagnostic and therapeutic algorithms as well as clinical practice guidelines might offer potential. For the patient community, organising customised and multilingual webinars could also work., (© 2022. The Author(s).)

While rare diseases (RDs) are by definition of low prevalence, the total number of patients suffering from an RD is high, and the majority of them have neurologic manifestations, involving central, peripheral nerve, and muscle. In 2017, 24 European Reference Networks (ERNs), each focusing on a specific group of rare or low-prevalence complex diseases, were formed to improve the care for patients with an RD. One major aim is to have "the knowledge travel instead of the patient," which has been put into practice by the implementation of the Clinical Patient Management System (CPMS) that enables clinicians to perform pan-European virtual consultations. The European Reference Network for Rare Neurological Diseases (ERN-RND) provides an infrastructure for knowledge sharing and care coordination for patients affected by a rare neurological disease (RND) involving the most common central nervous system pathological conditions. It covers the following disease groups: (i) Cerebellar Ataxias and Hereditary Spastic Paraplegias; (ii) Huntington's disease and Other Choreas; (iii) Frontotemporal dementia; (iv) Dystonia, (non-epileptic) paroxysmal disorders, and Neurodegeneration with Brain Iron Accumulation; (v) Leukoencephalopathies; and (vi) Atypical Parkinsonian Syndromes. At the moment, it unites 32 expert centers and 10 affiliated partners in 21 European countries, as well as patient representatives, but will soon cover nearly all countries of the European Union as a result of the ongoing expansion process. Disease expert groups developed and consented on diagnostic flowcharts and disease scales to assess the different aspects of RNDs. ERN-RND has started to discuss diagnostically unclear patients in the CPMS, is one of four ERNs that serve as foundation of Solve-RD, and has established an RND training and education program. The network will facilitate trial readiness through the establishment of an ERN-RND registry with a minimal data of all patients seen at the ERN-RND centers, thus providing a unique overview of existing genotype-based cohorts. The overall aim of the ERNs is to improve access for patients with RDs to quality diagnosis, care, and treatment. Based on this objective, ERNs are monitored by the European Commission on a regular basis to provide transparency and reassurance to the RD community and the general public., Competing Interests: TG has received research support from the Deutsche Forschungsgemeinschaft (DFG), the Bundesministerium für Bildung und Forschung (BMBF), the European Union (EU), and the National Institutes of Health (NIH). He has received speakers honoraria from, Roche, Teva and UBC. SG received institutional research support from Shire plc, outside of the submitted work. He is advisor and co-investigator for trials in Metachromatic Leukodystrophy (Shire/Takeda, Orchard), but receives no personal payment related to this role. TK has received research support from the Deutsche Forschungsgemeinschaft (DFG), the Bundesministerium für Bildung und Forschung (BMBF), the Bundesministerium für Gesundheit (BMG), the Robert Bosch Foundation, the European Union (EU), and the National Institutes of Health (NIH). He has received consulting fees from Biohaven, Roche and UBC. He has received a speaker honorarium from Novartis and Bayer. IL served as a member of advisory boards for Prevail Therapeutic and received research grants from ANR, DGOS, Vaincre Alzheimer Association, ARSla Association, Fondation Plan Alzheimer outside of the present work. Unrelated to the present work, WM has received fees for editorial activities with Springer and Elsevier, has served as advisor for Lundbeck and Biohaven, and has received teaching honoraria from UCB. MT reports grants from the Netherlands Organization for Health Research and Development ZonMW Topsubsidie (91218013), the European Fund for Regional Development from the European Union (01492947) and the province of Friesland, Dystonia Medical Research Foundation, from Stichting Wetenschapsfonds Dystonie Vereniging, from Fonds Psychische Gezondheid, from Phelps Stichting, and an unrestricted grants from Actelion and AOP Orphan Pharmaceuticals AG. NW is advisor and co-investigator for trials in Metachromatic Leukodystrophy and other leukodystrophies (Shire/Takeda, Orchard, Ionis, PassageBio), but receives no personal payment related to this role. HG has received research support from the Deutsche Forschungsgemeinschaft (DFG), the Bundesministerium für Bildung und Forschung (BMBF), the Bundesministerium für Gesundheit (BMG) and the European Union (EU). He has received consulting fees from Roche. He has received a speaker honorarium from Takeda. GL receives/has received research support from Bundesministerium für Bildung und Forschung (BMBF), CHDI Foundation, Deutsche Forschungsgemeinschaft (DFG), the European HD Network (EHDN), and the European Union (EU - Horizon2020, JPND), GL serves/served at Scientific Advisory Boards of Hoffmann-LaRoche, Novartis, PTC Therapeutics, TEVA, Triplet Therapeutics & Takeda and provided scientific advice to Acadia Pharm, AOP Orphan, Boehringer-lngelhe1m, CHDI Foundation, lonis Pharma, Lundbeck, NeuraMetrix, Prilenia, and Wave. MM received research support from the National Research, Development and Innovation Office for the National Brain Research and the National Bionics Projects. She has received consulting fees from Richter Gedeon Plc, Novartis, Sanofi-Genzyme, PTC Therapeutics, Stealth Biotherapeutics, Amicus, Takeda, and Biogen. She has received a speaker honorarium from Johnson and Johnson and AOP Orphan. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Reinhard, Bachoud-Lévi, Bäumer, Bertini, Brunelle, Buizer, Federico, Gasser, Groeschel, Hermanns, Klockgether, Krägeloh-Mann, Landwehrmeyer, Leber, Macaya, Mariotti, Meissner, Molnar, Nonnekes, Ortigoza Escobar, Pérez Dueñas, Renna Linton, Schöls, Schuele, Tijssen, Vandenberghe, Volkmer, Wolf and Graessner.)

Electrospinning is widely used for the manufacture of fibers in the low-micrometer to nanometer range, allowing the fabrication of flexible materials with a high surface area. A distinction is made between solution and melt electrospinning. The former produces thinner fibers but requires hazardous solvents; whereas the latter is more environmentally sustainable because solvents are not required. However, the viscous melt requires high process temperatures and its low conductivity leads to thicker fibers. Here, we describe the first use of the biobased dyes alizarin; hematoxylin and quercetin as conductive additives to reduce the diameter of polylactic acid (PLA) fibers produced by melt electrospinning; combined with a biobased plasticizer to reduce the melt viscosity. The formation of a Taylor cone followed by continuous fiber deposition was observed for all PLA compounds; reducing the fiber diameter by up to 77% compared to pure PLA. The smallest average fiber diameter of 16.04 µm was achieved by adding 2% (w/w) hematoxylin. Comparative analysis revealed that the melt-electrospun fibers had a low degree of crystallinity compared to drawn filament controls-resembling partially oriented filaments. Our results form the basis of an economical and environmentally friendly process that could ultimately, provide an alternative to industrial solution electrospinning.