新确诊为ECD

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第一步

A diagnosis of Erdheim-Chester Disease can be very frightening. Please know you are not alone. The ECD Global Alliance is here to help you get the information you need. We have members who have been living with ECD for decades. The following are some suggestions that might help with better understanding the disease and what actions you might want to take.

  • Learn about ECD. 了解得越多，您在对抗早期儿童发育迟缓（ECD）时就越有准备。凭借这些知识，您可以积极参与自己的治疗决策。成为一名知情患者，就是成为一名明智的患者。.
  • 确定您的治疗中心。. 请与您的主治医生商讨最佳的治疗地点。在市中心接受治疗有其优势， 护理中心 with doctors who are knowledgeable about ECD and who treat multiple patients. There are also advantages to being treated locally by doctors in your community. Some patients find the best option is to be evaluated at a 护理中心, ，并在那里制定治疗方案。随后，治疗有时可转交当地医生负责，只需偶尔到中心进行随访 护理中心. 您可以选择最适合您的护理模式。.
  • 请向ECD全球联盟注册。. 注册加入ECD全球联盟后，您将成为这个社区的一员。该社区致力于为患者提供支持，努力确保每个人都能获得清晰且最新的ECD信息，并致力于寻找更好的治疗方案，最终实现治愈。我们强烈鼓励所有受ECD影响或对此感兴趣的人士加入该社区。. 
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  • Connect with others in the ECD Community. The ECD Global Alliance offers patients and their families and friends different ways to connect with others in the community. Many people find it helpful to be in communication with others who share similar situations.
  • 了解相关研究。. There is ECD research that is happening in the US, Europe, and Israel. Some research studies are taking place in laboratories. Others are monitoring patients to learn more about how the disease affects patients. Still, other studies are focused on testing new and promising treatments. By joining in trials you will have access to the latest treatments for yourself and you will be helping the community to learn more about ECD.