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Read! Read! Read! - Learn everything you can about the disease, the ongoing research, the potential risks that the disease imply, any document or research paper that gives you a piece of information is useful.
Contact the community - It's small but active. You will find a lot of information and support there.
www.mct8.info
https://www.facebook.com/groups/AHDS.MCT8/ (closed group)
https://www.rareconnect.org/en/community/allan-herndon-dudley-syndrome-mct8
Don't give up hope! - Last but not least, never give up hope! Your child needs you to be strong now more than ever.