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如何提供/How to provide
如何提供/How to provide
可以发送邮件至邮箱：yifenggudaodexin@gmail.com
或小红书搜索并私信“遥海Harumi”（小红书号4190766977）
You can send emails to: yifenggudaodexin@gmail.com
需要提供什么
需要提供什么
（请尽可能的回答下列所有问题，不强求需要细致的回答全部，回答得大概些即可。但请至少回答1、2、3和7）
您所提供的罕见病的名字是什么？
您是患者还是患者家属？
患者的日常是怎样的？或者，作为患者家属的日常是怎样的？
患者是否能正常上学和工作？患者出行、社交，等是否“方便”？提供的无障碍服务是否有用？
使用药物治疗吗？使用的药物是什么？如何使用？昂贵吗？获得渠道容易吗？如果非药物治疗，是如康复训练等，也请告知一下过程。
您认为故事应该用患者的第一视角，还是患者家属的第一视角呢？
您是否需要匿名呢？不需要的话，我该怎么称呼你呢？
任何其他关于疾病的事情，任何想补充的。
Things to provide
Things to provide
(Please answer all the following questions as much as possible. You are not required to answer all of them in detail. Just give a rough answer. But please answer at least 1, 2, 3 and 7)
What is the name of the rare disease you mentioned?
Are you the patient or a family member of the patient?
What is the daily life of the patient like? Or, what is the daily life like for you as a family member of the patient?
Can the patient attend school and work normally? Is the patient able to travel, socialize, etc., "conveniently"? Are the provided accessibility services helpful?
Is the patient undergoing medication treatment? What medications are being used? How are they used? Are they expensive? Are they easily accessible? If non-medication treatments, such as rehabilitation training, are being used, please describe the process.
Do you think the story should be told from the first-person perspective of the patient or the first-person perspective of the family member?
Do you need to remain anonymous? If not, how should I address you?
Anything else about the disease that you would like to add or any other details you wish to share.
可以用以下工具来搜索对应疾病有没有被人提供过。（由于只是一个特别简单的搜索工具，底层逻辑很简单，因此会可能需要输入中文名或大写疾病英语缩写（或是突变基因名）来尝试）
You can use the following tool to search whether the corresponding disease has been provided by anyone. (Since it is just a very simple search tool, the underlying logic is very simple, so you may need to enter the disease name with the first letter capitalized or the English abbreviation of the disease with the first letter capitalized (or the mutant gene name with all letter capitalized) to try)
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