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# 中新健康丨厦门科技助残 让罕见病患不再孤单
中新网厦门5月19日电 (记者 李思源)正值第三十四次全国助残日，厦门市残联19日举办“科技助残，让罕见早发现”活动，为高度疑似罕见病的残疾人进行免费义诊与基因筛查，提高公众对罕见病的认知，推动社会对罕见病患者这一少数群体的关注和关爱。
此次活动旨在利用现代科技手段，帮助疑似罕见病患者及早确诊，从而得到及时的治疗和关爱。义诊现场，专家们为参与者提供了详细的诊断和咨询服务，同时进行了基因筛查，以便发现潜在的罕见病风险。
厦门市残联理事长表示，希望通过此次活动，能让更多人了解罕见病，关注罕见病患者的生活。他说：“我们希望通过科技的力量，让罕见病患者不再孤单，让他们得到更多的关爱和支持。”
据了解，罕见病是指患病率低、病情严重、治疗困难的疾病。我国罕见病患者的数量约为2000万人，但由于罕见病种类繁多，且部分疾病的诊断和治疗难度较大，使得罕见病患者在很大程度上被忽视和边缘化。
近年来，随着科技的发展，越来越多的罕见病得到了有效的诊断和治疗。厦门市残联此次举办的活动，正是借助科技手段，为罕见病患者提供更多可能性。活动吸引了众多市民参与，现场氛围热烈。
此外，厦门市残联还积极开展罕见病知识的普及工作，通过举办讲座、发放宣传资料等方式，提高公众对罕见病的认知。相关负责人表示，未来厦门市残联将继续推动科技助残工作，为罕见病患者提供更多帮助。
此次“科技助残，让罕见早发现”活动，不仅为疑似罕见病患者提供了诊断和治疗的机会，也让他们感受到了社会的关爱。相信在全社会共同努力下，罕见病患者的生活将得到持续改善，让他们不再孤单。
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英语如下：
## China News Service | Xiamen Technology Aids Disabled, Early Detection of Rare Diseases
Keywords: Technology aids disabled, Xiamen event, rare disease free clinics
News Content:
### Xiamen Holds Technology Aids Disabled Event to Promote Early Detection of Rare Diseases
Xiamen, May 19 (Reporter Li Siyuan) In celebration of the 34th National Day of Helping the Disabled, the Xiamen Disabled Persons’ Federation (DPF) held an event themed “Technology Aids Disabled, Early Detection of Rare Diseases” on the 19th, offering free clinical diagnoses and genetic screenings for individuals with high suspicion of rare diseases, to enhance public awareness of rare diseases and to promote society’s attention and care for this minority group.
The aim of this event is to utilize modern technology to help suspected rare disease patients get an early diagnosis and thus receive timely treatment and care. At the free clinic, experts provided participants with detailed diagnoses and consultation services, while also conducting genetic screenings to identify potential risks of rare diseases.
The President of the Xiamen DPF stated that through this event, they hope to let more people understand rare diseases and pay attention to the lives of patients with rare diseases. He said, “We hope to use the power of technology to make rare disease patients no longer feel lonely and to give them more care and support.”
It is understood that rare diseases are those with low prevalence, severe symptoms, and difficult treatment. There are about 20 million patients with rare diseases in China. However, due to the wide variety of rare diseases and the challenges in diagnosis and treatment for some of them, patients with rare diseases are often overlooked and marginalized.
In recent years, with the advancement of technology, more and more rare diseases have been effectively diagnosed and treated. This event organized by the Xiamen DPF is using technological means to provide more possibilities for rare disease patients. The event attracted many citizens to participate, creating a lively atmosphere.
In addition, the Xiamen DPF actively promotes the popularization of knowledge about rare diseases, through hosting lectures, distributing informational materials, and other means to enhance public understanding. Relevant responsible persons stated that in the future, the Xiamen DPF will continue to promote technology-aided disability work and provide more assistance to rare disease patients.
The event “Technology Aids Disabled, Early Detection of Rare Diseases” not only offers diagnosis and treatment opportunities for suspected rare disease patients but also lets them feel the warmth of society. With the joint efforts of everyone, it is believed that the lives of patients with rare diseases will continue to improve, no longer making them feel lonely.
【来源】http://www.chinanews.com/life/2024/05-19/10219670.shtml
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