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@becsbuddy

@yuhongtan I’m sorry that I didn’t see your request for help in January. I was on sick leave so lots of things got missed. There are two organizations that you can call:
GARD: genetic and rare diseases information center
https://rarediseases.info.nih.gov/
NORD: National organization for rare diseases
https://rarediseases.org/
Does your father have a doctor currently and is he receiving treatment?

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Replies to "@yuhongtan I’m sorry that I didn’t see your request for help in January. I was on..."

Thank you for your information! My father is receiving treatment in China. He can walk now , but he still has numbness in the hands. Hope you get well soon!