Rare diseases (RDs) as a whole affect a huge number of individuals although each specific condition comprises a low number of individuals. As a consequence, funds allocated to expand research to all conditions are often limited. Several initiatives have emerged to invest more resources for research in RDs, but patients express unmet needs regarding educational initiatives, awareness support, and psychosocial resources. We developed an educational training program in the format of weekly sessions covering basic medical scientific knowledge and psychosocial aspects of RDs. The aim of this initiative was to assess its overall impact regarding knowledge, psychological issues, and participant satisfaction. Items were evaluated through surveys before and after the sessions. Here, we report the experience and impact of two editions of this initiative with a total of 37 participants. Our results show improvements in knowledge and better management of the psychological impact. Moreover, participants were able to exchange experiences and concerns, most of which were shared even though the RDs were different. Overall, the program was evaluated by the participants as a highly beneficial experience and all of them were interested in attending advanced editions.

中文翻译：

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超越疾病本身：针对罕见病患者和家庭的跨领域教育计划

罕见病 (RD) 总体上影响大量个体，尽管每种特定病症只包含少量个体。因此，分配用于将研究扩展到所有条件的资金通常是有限的。已经出现了一些为 RD 研究投入更多资源的举措，但患者表达了在教育举措、意识支持和社会心理资源方面未得到满足的需求。我们制定了每周课程形式的教育培训计划，涵盖 RD 的基本医学科学知识和社会心理方面。该计划的目的是评估其对知识、心理问题和参与者满意度的整体影响。通过会前和会后的调查对项目进行评估。这里，我们报告了该倡议的两个版本的经验和影响，共有 37 名参与者。我们的结果显示了对心理影响的了解和更好的管理。此外，参与者能够交流经验和关注点，尽管 RD 不同，但其中大部分是共享的。总体而言，参与者认为该计划是一次非常有益的体验，他们都对参加高级版本感兴趣。