推动罕见病社区的卫生公平

罕见的疾病 Day is a global movement dedicated to improving equity in 社会 opportunity, 卫生保健, and access to diagnosis and therapies for the millions of people living with a 罕见的 疾病.

通过遵循科学, 与社区合作并吸引主要合作伙伴, we can help people with 罕见的 疾病s and their caregivers overcome these challenges and receive the care and treatments they need to live their lives to the fullest.

卫生公平与罕见病社区

集体, more than 4亿年 世界各地的人们都患有一种罕见的疾病, defined as conditions that affect a small number of people compared to the general population.¹ The 罕见的 疾病 community is by far the most marginalised patient community, 不管他们是什么种族, background, 社会经济水平或地理位置, 因为他们面临着独特的挑战, many beyond those that hinder access to 卫生保健 for people living with more common chronic conditions.

People living with 罕见的 疾病s often have a lengthy diagnostic journey, 缺乏治疗选择, 并且对他们的状况认识有限. 对于那些生活在 罕见的 疾病, 卫生不平等仍然是他们获得护理的主要障碍, 这是澳门第一赌城在线娱乐必须解决的首要问题. 

有超过10个,000种罕见疾病, 其中90%以上的人没有得到批准的治疗方法.^2,3 平均, it takes nearly five years —and often longer — to receive a 罕见的 疾病 diagnosis, 这趟旅程通常涉及多位医生, 一路上都有专家和误诊.⁴ 许多罕见疾病很难被发现, 误诊司空见惯, particularly for neurological 疾病s or 疾病s that present in childhood or adolescence. 

诊断前后对比, living with a 罕见的 condition can make nearly every aspect of life more difficult. 患有罕见疾病的人, 以及他们的看护人, 经常经历经济困难, 更大的社会隔离, 治疗的严重延误, 更差的健康结果. 在医疗条件薄弱的国家, 社会, 经济基础设施, 对于患有罕见疾病的人来说，挑战更大.

罕见疾病的数量

每天都为患有罕见疾病的人带来有意义的影响

We are committed to taking bold steps to overcome these societal and policy challenges and improve health equity for people living with 罕见的 疾病s:

• 缩短诊断时间: Access to effective screening and diagnostic tools remains inequitable for many 罕见的 疾病 patients. We are working to expand access to newborn screenings and next-generation sequencing, 两种关键方法可以更快地提供所需的答案. We also are developing and testing digital health technologies to make it easier to reach 未确诊的病人 在服务不足的地理位置.  
• 改善获得护理和治疗的机会: Rare 疾病 patients — regardless of where they live — face significant obstacles to accessing quality 卫生保健 and treatment. 拥有数字技术专业知识和支持, we can overcome barriers for people living in rural or underserved areas, 哪些国家缺少医疗诊所, reliable internet connectivity and transportation options that can delay or impede access to necessary care. These technological advances have hastened the discovery of new treatments for patients with 罕见的 疾病s.  
• 鼓励制定公平的罕见病保健政策; Addressing health equity challenges will require policymakers and 卫生保健 stakeholders to consider the unique circumstances inherent to 罕见的 疾病 drug development, 报销和诊断, 在其他问题中, 制定合理的政策解决方案. Such solutions also should encourage and facilitate patient access to treatments and be supported by a 卫生保健 infrastructure that encourages appropriate data collection and medical research, 使用真实世界的证据和跨社区的合作.   

这些步骤的基础是需要加强外联和教育, 尤其是在医疗保健提供者中, because raising awareness of 罕见的 疾病s in underserved communities can make a difference in care. Health care providers often lack knowledge of 罕见的 疾病s and have their own biases, making it hard to diagnose and provide appropriate treatments for patients.

共同努力，改变罕见病患者的生活

虽然澳门第一赌城在线娱乐有重要的角色要扮演, we cannot solve all the issues faced by 罕见的 疾病 patients on our own. 澳门第一赌城在线娱乐赞赏像 国际罕见病, 病因 and others that has been instrumental to furthering the concept of health inequity from a 罕见的 疾病 perspective, leading the United Nations to take steps to recognise and address the broad challenges facing people living with 罕见的 疾病s, 并敦促联合国会员国采取行动. 

We also have further affirmed our commitment to change through our support of the 全球卫生公平网络零卫生差距承诺. Now we need country-level action to bolster this progress so that those living with 罕见的 疾病s have the same opportunities as the rest of society. 澳门第一赌城在线娱乐呼吁政策制定者, 卫生保健提供者, patients and other stakeholders to join us at every step of the process.

澳门第一赌城在线娱乐决心做出改变——缩短诊断时间, 改善获得护理和治疗的机会, and engaging global policymakers to advocate for broader support for the 罕见的 疾病 community. That’s because 罕见的 疾病 patients and their families around the world are counting on us to meet their needs, 不仅仅是在罕见病日, 而是每一天.

Veeva ID: Z4-61257
筹备日期:2024年1月