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FAQ

EB Care Tiawan — For EB patients & families

Q1

How long is the time from registration to a clinic?

Answer: After you complete the appointment online, someone will contact you to arrange a suitable time for your visit within 3-days.

Q2

I have been fixed at another hospital for follow-up. What other services can the National Cheng Kung University Special Outpatient Clinic provide?

Answer: If you are used to regular visits in other hospitals or take your daily dressings without any advance problems, we recommend that you still accept the care of your original hospital. National Cheng Kung University Hospital Special Clinic based on the past 30 years of experience in the diagnosis and treatment of EB, is called to focus on providing the following services: 1) genetic testing and consultation, 2) experimental research on personalized treatment, 3 ) integrate medical services with different specialists, 4) family support, whole-person care, music therapy and other comprehensive health care.

Q3

After I have a rare skin disease, what social resources are there to help me?

Answer: In Taiwan, many government social welfare resources are required the certification of disability. You can check them in the “welfare resources section” of this website. But it is Chinese only.

Q4

Can EB be cured?

Answer: Everyone needs to face struggles in life, and EB patients are no exception. Their skin problems caused by genetic mutations cannot be completely and long-term cured now, but there are different care and improvement methods depend on their different genotypes. At the same time, medicine is constantly improving. However, when everyone is on the journey of cure for skin problems, we also care for EB patients and their families’ life issues other than physiological illness, and work with them towards “well-being”.

Q5

What will my donation be used for?

Answer: Your donation will supply for:

  1. Novel or experimental medical trial that cannot be paid by government or commercial insurance.

  2. The cost of genetic study for patients and their necessary family members.

  3. Expenses for individual or group expressive art therapy for patients and their families.

  4. For patients who are limited mobility, arranging home visits or in-home medical services.

  5. Expenses required for campus life education, publications, and public promotion.

  6. Other purposes you have designated for the holistic care of rare skin diseases.

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