{"id":137900,"date":"2024-10-17T11:26:06","date_gmt":"2024-10-17T09:26:06","guid":{"rendered":"https:\/\/cesie.org\/?p=137900"},"modified":"2024-10-17T11:31:24","modified_gmt":"2024-10-17T09:31:24","slug":"educationalaidkits-rare-diseases","status":"publish","type":"post","link":"https:\/\/cesie.org\/en\/higher-education-and-research\/educationalaidkits-rare-diseases\/","title":{"rendered":"How can we encourage doctors to specialise in rare diseases?"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><strong>How can medical education become more inclusive and accessible, improving understanding of rare diseases among future professionals in the field?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><a href=\"https:\/\/cesie.org\/en\/project\/educationalaidkits\/\" title=\"\" data-wpel-link=\"internal\">Educational Support Kits in the Field of Rare Diseases: Bringing the Reality of Rare Diseases to the VET Field<\/a><\/strong> will train future medical professionals on the day-to-day reality of rare diseases in order to make <strong>medical education more accessible and inclusive, avoid possible risks and negligence, and open new paths for employability.<\/strong> To this end, the consortium collaborates with rare disease experts and vocational education and training (VET) teachers to create content on rare diseases and bring inclusive methods into their classrooms.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Throughout the European Union, <strong>the everyday livelihoods of people living with rare diseases remains poorly understood.<\/strong> This project aligns with charities and patient activists advocating for increased awareness and improved understanding by focusing on medical education. <strong>Our target group are medical professionals currently undergoing educational training<\/strong>, for whom we are building multilingual educational kits, virtual courses, and methodological guides and advice.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The aim of our project is to improve accessibility and inclusivity in medicine, to avoid any possible risks or negligence through lack of knowledge on rare diseases and to open new professional pathways for future medical professionals wishing to pursue a career in rare diseases. To do so, this <strong>project collaborates with rare diseases experts and Vocational education and training (VET) teachers in order to create content on rare diseases and bring inclusive methods into their classrooms.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Our project partners had their first in-person meeting at the Fundaci\u00f3n Isabel Gemio headquarters in Madrid, Spain, on 31st May 2024. The meeting began with an analysis report of rare diseases in the VET field in each partner country. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">In the afternoon, the partners visited the Colegio Internacional G. Nicoli and spoke to their teaching staff, whose VET curriculum provided powerful and important insights to the partners. To create a pedagogical approach, the students at Colegio Internacional G. Nicoli conduct individual research projects on rare diseases: they build machetes of the body parts affected by the illness, they reimagine what how clinics could be improved to become inclusive to people suffering from rare diseases, and create poster presentations.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">We thank the staff from the Colegio Internacional G. Nicoli for their interviews and tour, which provided us with an excellent foundation to start the project. It will be an exciting year and a half for our consortium and we can\u2019t wait to get started on this important project.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">For further information contact Ritti Soncco: <a href=\"mailto:ritti.soncco@cesie.org\">ritti.soncco@cesie.org<\/a>.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">About the project<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/cesie.org\/project\/educationalaidkits\/\" title=\"\" data-wpel-link=\"internal\">Educational Support Kits in the Field of Rare Diseases: Bringing the Reality of Rare Diseases to the VET Field<\/a> is a project funded by ERASMUS+, European Commission.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Partners<\/h2>\n\n\n\n<ul class=\"wp-block-list\">\n<li><a href=\"https:\/\/www.fundacionisabelgemio.com\/\" target=\"_blank\" rel=\"noreferrer noopener external\" data-wpel-link=\"external\">Fundaci\u00f3n Isabel Gemio<\/a>&nbsp;(Spain, coordinator)<\/li>\n\n\n\n<li><a href=\"https:\/\/www.asem-esp.org\/\" target=\"_blank\" rel=\"noreferrer noopener external\" data-wpel-link=\"external\">Federaci\u00f3n Espa\u00f1ola de Enfermedades Neuromusculares<\/a>&nbsp;(Spain)<\/li>\n\n\n\n<li><a href=\"https:\/\/www.cmt-france.org\/\" target=\"_blank\" rel=\"noreferrer noopener external\" data-wpel-link=\"external\">Association Charcot-Marie-Tooth et neuropathies p\u00e9ripheriques<\/a>&nbsp;(France)<\/li>\n\n\n\n<li><a href=\"https:\/\/www.uevora.pt\/\" target=\"_blank\" rel=\"noreferrer noopener external\" data-wpel-link=\"external\">Universidades de \u00c9vora<\/a>&nbsp;(Portugal)&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/rijetke-bolesti.com\/\" target=\"_blank\" rel=\"noreferrer noopener external\" data-wpel-link=\"external\">Hrvatski Rvatski Savez Za Rijetke Bolesti<\/a>&nbsp;(Croatia)<\/li>\n\n\n\n<li><a href=\"https:\/\/cesie.org\/en\/units\/research\/\" data-wpel-link=\"internal\">CESIE ETS<\/a>&nbsp;(Italy)<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">For further information<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Leggi la <a href=\"https:\/\/cesie.org\/en\/project\/educationalaidkits\/\" title=\"\" data-wpel-link=\"internal\">scheda progetto<\/a>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Contatta Ritti Soncco: <a href=\"mailto:ritti.soncco@cesie.org\">ritti.soncco@cesie.org<\/a>. <\/p>\n","protected":false},"excerpt":{"rendered":"<p>Across the European Union, the daily lives of people with rare diseases are still poorly understood. 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