评论 11
过滤器:
评分
语言
种类:
最近的
T
5 几个月前

I have been using the services of EDS for a while ...

I have been using the services of EDS for a while now and I am extremely satisfied with their assistance. The website (ehlers-danlos.com) is user-friendly and informative. The team at EDS is always helpful and provides prompt responses to any queries or concerns. The resources available have been instrumental in managing my condition effectively. I highly recommend EDS to anyone seeking support and reliable information.

A
7 几个月前

👌 EDS has been a lifesaver for me. The resources a...

👌 EDS has been a lifesaver for me. The resources available on their website (ehlers-danlos.com) have been invaluable in managing my condition. The team at EDS is knowledgeable, compassionate, and always ready to assist. The support they provide has made a significant difference in my life. I highly recommend EDS to anyone seeking exceptional services and support. 👌

G
10 几个月前

EDS is an amazing company with highly knowledgeabl...

EDS is an amazing company with highly knowledgeable and professional staff. I have been a customer for a few months now and I am extremely impressed with their services. The website (ehlers-danlos.com) is user-friendly and provides all the necessary information. The team at EDS is always prompt in their responses and goes above and beyond to ensure customer satisfaction. The resources provided have been incredibly helpful in managing my condition. I would highly recommend EDS to anyone seeking quality services and support.

S
1年以前

🙌 EDS has been a game-changer for me. The website ...

🙌 EDS has been a game-changer for me. The website (ehlers-danlos.com) is a treasure trove of information and resources that have proven to be extremely beneficial in managing my condition. The team at EDS is highly responsive, empathetic, and dedicated to providing exceptional service. I am grateful for their support and guidance. Highly recommended! 🙌

B
1年以前

EDS provides top-notch services for individuals wi...

EDS provides top-notch services for individuals with Ehlers-Danlos syndrome. The website (ehlers-danlos.com) offers a wealth of information that has been instrumental in helping me navigate my condition. The team at EDS is highly skilled, empathetic, and dedicated to providing the best support possible. I am grateful for their assistance and would recommend their services to anyone in need.

J
1年以前

👍 I have been a customer of EDS for a while now an...

👍 I have been a customer of EDS for a while now and I am extremely happy with their services. The website (ehlers-danlos.com) is easy to navigate and provides a wealth of information about the condition. The team at EDS is always responsive and helpful. They have been instrumental in providing support and guidance in managing my condition. I really appreciate their dedication and expertise. Highly recommended! 👍

C
1年以前

I have been a customer of a certain company for so...

I have been a customer of a certain company for some time now and I must say that I am thoroughly impressed. The level of service provided by the team at EDS is commendable. The resources available on the website (ehlers-danlos.com) have been immensely helpful in managing my condition. The staff is always courteous and prompt in their responses. They have truly made a positive impact on my life. I highly recommend EDS for their exceptional services.

R
1年以前

I recently started using the services of a company...

I recently started using the services of a company with a website called ehlers-danlos.com and I must say, I am very impressed. The level of professionalism and expertise demonstrated by the team at EDS is outstanding. I have found the resources and information provided on their website to be extremely useful in managing my condition. The staff members are always friendly and willing to assist with any queries or concerns. The only suggestion I have is to improve the loading speed of their website. Overall, I am extremely satisfied and would highly recommend EDS to others.

M
1年以前

EDS is a company that provides exceptional service...

EDS is a company that provides exceptional services when it comes to managing Ehlers-Danlos syndrome. The website (ehlers-danlos.com) offers a plethora of information and resources that have been incredibly beneficial to me. The team at EDS is knowledgeable, professional, and always willing to go the extra mile to ensure customer satisfaction. I am grateful for their support in managing my condition and would highly recommend their services to anyone in need.

C
1年以前

I have been a customer of EDS for quite some time ...

I have been a customer of EDS for quite some time now and I cannot speak highly enough of their services. The website (ehlers-danlos.com) is user-friendly and contains a lot of valuable information. The team at EDS is knowledgeable, professional, and always willing to go the extra mile to ensure customer satisfaction. They have been instrumental in helping me manage my condition effectively. I highly recommend EDS to anyone in need of support and reliable resources.

关于EDS

EDS:拯救和改善受埃勒斯-当洛斯综合征影响的人们的生活

Ehlers-Danlos 协会 (EDS) 是一个全球社区,旨在拯救和改善受 Ehlers-Danlos 综合征 (EDS)、过度运动谱系障碍和相关疾病影响的人们的生活。 EDS 是一组影响身体胶原蛋白的遗传性结缔组织疾病,胶原蛋白为身体的各种组织提供强度和弹性。该协会由 Nancy Hanna Rogowski 于 1985 年创立,她本人也患有 EDS。

多年来,该协会已经发展成为致力于为 EDS 患者提供支持、教育、研究资金和宣传的领先组织。它的成员来自世界各地,他们是患者、护理人员、医疗保健专业人员或支持者。

EDS 的主要目标之一是提高医疗保健专业人员对这些疾病的认识,以便他们能够尽早诊断出这些疾病。许多患有 EDS 的人多年来都没有得到诊断,因为他们的症状经常被误认为是其他疾病,例如纤维肌痛或慢性疲劳综合症。

为实现这一目标,EDS 组织了会议和研讨会,医疗保健专业人员可以从该领域的专家那里了解更多关于这些情况的信息。该协会还提供教育资源,例如解释什么是 EDS 以及它如何影响人们的小册子和视频。

EDS 工作的另一个重要方面是支持对这些条件的研究。该协会资助的研究项目旨在更多地了解这些疾病的病因,以便开发出更好的治疗方法。他们还与世界各地的研究人员合作,开展与结缔组织疾病相关的各种研究。

除了提高医疗保健专业人员的意识并支持对这些疾病的成因进行研究之外,EDS 工作的另一个重要方面是为与之同住的患者提供支持。患有像 EDS 这样的罕见疾病在身体和情感上都具有挑战性;因此,能够接触到个人分享经验的支持团体是非常宝贵的。

EDS 提供在线论坛,会员可以在这些论坛上与其他有类似生活经历的人联系。他们还在全球范围内组织本地支持小组,成员定期通过 Zoom 或 Skype 等视频会议平台面对面或虚拟地会面。

最后但重要的是,宣传在实现国家层面关于影响全球 ED 等罕见疾病患者的政策变化方面发挥着重要作用,同时确保在全球不同地区获得优质护理服务。

综上所述,
Ehlers-Danlos Society (EDS) 通过提高医疗保健提供者对影响全球许多人的这一组遗传性结缔组织疾病的认识,同时通过其在线论坛和全球当地团体提供情感支持以及资助研究项目,在挽救生命方面发挥着重要作用为受 ED 影响的人开发更好的治疗方法,并倡导改变政策以改善全球不同地区的优质护理服务!

已翻译