你身边有人罹患罕见疾病吗？

1. 1.你家里或社交圈中有没有人得了罕见疾病，这对你的生活有什么影响？
   Is there anyone in your family or circle of acquaintances with a rare disease, and how has this affected your life?
2. 2.你是否深入了解过罕见疾病这个话题？如果有，什么让你最感动？
   Have you ever dealt intensively with the topic of rare diseases, and if so, what touched you most?
3. 3.很多人对罕见疾病存在偏见，常常被误解。你遇到过什么误解？
   Many people have prejudices against rare diseases, which are often misunderstood. What misunderstandings have you experienced or observed yourself?
4. 4.你认为医疗系统是否能充分照顾罕见疾病患者？为什么？
   Do you think the health care system adequately cares for people with rare diseases? Why or why not?
5. 5.对你来说，拥有一个在健康困难时支持你的伴侣有多重要？
   How important is it for you to have a partner who supports you in difficult health situations?
6. 6.自助组织对于罕见疾病患者的作用是什么？你有过相关经验吗？
   What role do self-help groups play for people with rare diseases, and have you had personal experiences with them?
7. 7.你怎么看待罕见疾病治疗的研究和进展？
   What do you think about research and progress in treating rare diseases?
8. 8.你认为罕见疾病患者面临哪些社会挑战？
   What societal challenges do you see for people suffering from rare diseases?
9. 9.你认为媒体和社交网络在提高公众对罕见疾病的认识方面发挥了积极作用吗？有什么方式？
   Do you think media and social networks play a positive role in raising awareness about rare diseases? In what way?
10. 10.怎样才能提高社会对罕见疾病的认识？
    How could awareness of rare diseases be increased in society?

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