Driving health equity for the 罕见的 疾病 community

罕见病日是一个致力于改善社会机会公平的全球性运动, 卫生保健, 以及为数百万患有罕见疾病的人提供诊断和治疗.

By following the science, collaborating with the community and engaging key partners, 澳门第一赌城在线娱乐可以帮助罕见病患者及其护理人员克服这些挑战，并获得所需的护理和治疗，使他们过上充实的生活.

Health equity and the 罕见的 疾病 community

集体, 全世界有超过4亿人患有一种罕见疾病, 被定义为与一般人群相比，影响一小部分人的情况.¹ 罕见病群体是迄今为止最边缘化的患者群体, no matter their race, background, socio-economic level or geography, because they face unique challenges, 除了那些阻碍患有更常见慢性病的人获得卫生保健的因素之外，还有许多其他因素.

患有罕见疾病的人往往要经历漫长的诊断过程, lack treatment options, and encounter limited awareness of their conditions. For people living with a 罕见的 疾病, health inequity remains a major barrier to their care, and it is a top priority that we must address. 

There are more than 10,000 罕见的 疾病s, more than 90 percent of which do not have an approved treatment.^2,3 平均, 诊断出一种罕见的疾病通常需要将近5年甚至更长时间, a journey that often involves multiple doctors, specialists and misdiagnoses along the way.⁴ Many 罕见的 疾病s can be difficult to detect, making misdiagnosis common, 特别是针对神经系统疾病或儿童或青少年时期的疾病. 

Before and after diagnosis, 患有一种罕见的疾病几乎会使生活的各个方面都变得更加困难. People who have 罕见的 疾病s, along with their caregivers, often experience economic hardship, greater 社会 isolation, significant delays in treatment, and poorer health outcomes. In countries with weak medical, 社会, and economic infrastructures, the challenges are magnified for people with 罕见的 疾病s.

Rare 疾病s by the numbers

Making a meaningful impact for people with 罕见的 疾病s, everyday

澳门第一赌城在线娱乐承诺采取大胆步骤，克服这些社会和政策挑战，改善罕见病患者的健康公平:

• Reducing the time to diagnosis: 对许多罕见病患者来说，获得有效的筛查和诊断工具仍然不公平. 澳门第一赌城在线娱乐正在努力扩大新生儿筛查和下一代测序, two key ways to provide needed answers more rapidly. 澳门第一赌城在线娱乐还在开发和测试数字医疗技术，使其更容易实现 undiagnosed patients in underserved geographic locations.  
• Improving access to care and treatment: 罕见病患者——无论他们生活在哪里——在获得高质量的卫生保健和治疗方面都面临着重大障碍. With digital technology expertise and support, 澳门第一赌城在线娱乐可以为生活在农村或服务不足地区的人们克服障碍, who often lack medical clinics, 可靠的互联网连接和交通选择可能延迟或阻碍获得必要的护理. 这些技术进步加速了对罕见疾病患者的新疗法的发现.  
• Encouraging the enactment of equitable 罕见的 疾病 health policy: 应对卫生公平挑战需要决策者和卫生保健利益攸关方考虑罕见病药物开发所固有的独特情况, reimbursement and diagnosis, among other issues, and craft sound policy solutions. 这种解决办法还应鼓励和便利患者获得治疗，并得到鼓励适当数据收集和医学研究的保健基础设施的支持, the use of real-world evidence and collaboration across communities.   

Underpinning these steps is the need to enhance outreach and education, especially among 卫生保健 providers, 因为在服务不足的社区提高对罕见病的认识可以使护理有所不同. 卫生保健提供者往往缺乏对罕见疾病的了解，并且有自己的偏见, 使其难以诊断并为患者提供适当的治疗.

A joint effort to transform the lives of people with 罕见的 疾病s

While we have an important role to play, 澳门第一赌城在线娱乐不可能独自解决罕见病患者面临的所有问题. We applaud the work of organisations like 罕见的疾病s International, 病因 从罕见疾病的角度来看，这对促进健康不平等的概念起到了重要作用, 领导联合国采取步骤，承认和应对罕见病患者面临的广泛挑战, and urging UN Member States to take action. 

澳门第一赌城在线娱乐还通过对联合国的支持进一步肯定了澳门第一赌城在线娱乐对变革的承诺 Global Health Equity Network Zero Health Gaps Pledge. 现在，澳门第一赌城在线娱乐需要在国家层面采取行动，加强这一进展，使罕见病患者与社会其他人享有同样的机会. We call on policymakers, 卫生保健 providers, 患者和其他利益相关者加入澳门第一赌城在线娱乐的每一步.

We are determined to make a difference -- reducing time to diagnosis, improving access to care and treatment, 让全球决策者参与进来，倡导为罕见病社区提供更广泛的支持. 这是因为世界各地的罕见病患者和他们的家人都指望澳门第一赌城在线娱乐满足他们的需求, not only on 罕见的疾病 Day, but on each and every day.

Veeva ID: Z4-61257
Date of preparation: January 2024