日期：2023年2月24日，星期五，雷克瑟姆-格林德沃大学（wgu）的学生和教职员工支持一场旨在揭示罕见病的运动。 为了纪念2月28日的罕见病日，该大学正与其他地方组织联合起来，支持“罕见病日”倡议，该倡议旨在强调罕见病对个人及其家庭成员的影响。 rarexham是以模具为基础的社区利益公司（cic）的创意，他们用艺术促进积极的社会变革。 为了帮助提高人们的认识，该大学正在举办一个摄影展，重点关注罕见病及其影响。 在全球范围内，每17人中就有1人患有罕见病，30%被诊断患有罕见病的儿童将在5岁生日前死亡。 wgu公共政策参与负责人ninarudle是该机构公民使命项目的负责人，她说：“我非常自豪地代表该大学的所有人，支持rarexham，这是一项极其特殊和重要的举措，旨在强调罕见病。 “我和家人有着相同但不同的个人关系，因为我的家人受到了罕见病的影响。 来自大学的支持和相同但不同的支持对我们如何应对并继续应对我和我所爱的人难以置信的困难时期产生了巨大的影响。 “为了配合罕见病日，我们将举办一场摄影展，突出它们的影响。 “我们对罕见病运动的支持重申了该大学对2019年签署的罕见病宪章的承诺。 作为我们公民使命项目的一部分，我们也很高兴能够与相同但不同的人合作，为我们的儿童大学创建学习内容。 cheridwen hughes，《相同但不同》的导演，和她的儿子一样有罕见疾病的亲身经历，isaac患有moebius综合征，这是一种罕见的疾病，由控制眼球运动和面部表情的面部神经发育不良引起。 这种情况还会影响负责说话、咀嚼和吞咽的神经。 ceridwen说：“我们做的许多相同但不同的举措都是基于扩大那些受罕见疾病影响的人的声音。 “从我儿子的经历来看，我知道确保患有罕见病的人得到他们所在社区的支持是多么重要，这就是我们创建rarexham的原因。 这个想法是让人们和组织以他们希望的任何方式表示支持，并在雷克瑟姆的旗帜下团结起来。 “我要感谢雷克瑟姆-格林德沃大学的学生和教职员工对这场重要运动的大力支持。 “你可以通过访问www来了解更多关于rarexham的信息，以及如何表达你的支持。 雷克瑟姆。 指挥官。 英国。date: friday 24th february 2023students and staff at wrexham glyndwr university (wgu) are lending their support to a campaign aimed at shining a light on rare diseases.to mark rare disease day, which is taking place on 28 february, the university is joining forces alongside other local organisations to champion the rarexham initiative, which was created to highlight the impact rare diseases have on individuals and their family members.rarexham is the brainchild of mold-based community interest company (cic), same but different, who use the arts for positive social change.in a bid to help raise awareness, the university is hosting a photographic exhibition focussing on rare diseases and the impact they have.across the world, 1 in 17 people have a rare disease and 30 per cent of children diagnosed with a rare disease will die before their fifth birthday.nina ruddle, head of public policy engagement at wgu, who leads the institution’s civic mission project, said: “on behalf of all at the university, i’m extremely proud to lend our support to rarexham – an incredibly special and vital initiative, which aims to highlight rare diseases.“i have a personal connection to same but different as my family have been impacted by rare diseases. the support from the university and same but different made a huge difference to how we coped and continue to cope through an incredibly difficult time for me and my loved ones.“to tie in with rare disease day, we’re hosting a photographic exhibition highlighting their impact.“our support of the rarexham campaign reaffirms the university’s commitment to the rare disease charter, which we signed up to in 2019. we are also delighted to be working with same but different to create learning content for our children’s university, as part of our civic mission project.”ceridwen hughes, director of same but different, has personal experience of rare disease as her son, isaac has moebius syndrome – a rare condition that results from underdevelopment of the facial nerves that control some of the eye movements and facial expressions. the condition can also affect the nerves responsible for speech, chewing and swallowing.ceridwen said: “many of the initiatives we do at same but different are based around amplifying voices of those affected by rare disease.“from my son’s experience, i know how important it is to ensure people with rare diseases feel supported by the community in which they live, which is why we created rarexham. the idea is for people and organisations to show their support in any way they wish and come together under the banner of rarexham.“i’d like to thank students and staff at wrexham glyndwr university for their amazing support of this important campaign.”you can find out more about rarexham and how you can show your support by visiting www.rarexham.co.uk .本文来源： WGU支持RARExam运动纪念罕见病日
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