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Rare Genes Day

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tanith Mon 26-Feb-18 17:32:04

My niece and nephew both have a rare genetic syndrome I'm going to let them know about this thanks for the info.

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hildajenniJ Mon 26-Feb-18 17:05:30

I didn't know about this either Auntieflo. Two of my DGSs have a disease that is on the list of rare diseases. It's too late now, but next year I will definitely nominate my DD. I know that X linked ichthyosis isn't life limiting, but it is a battle every day to get emollients on to those boys as they also have ASDs and hate the feel of the creams on their skin.

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Auntieflo Mon 26-Feb-18 12:29:20

I have just found out that 28th Feb, is Rare Genes Day, although I believe that the whole of February is dedicated to this. I feel that I should have known, as a distant family member has a child with this diagnosis. On reading her blog, I wonder at her strength, and also that of her family. She makes me cry at times, but is always upbeat. There is no cure, but ongoing research that will hopefully help others in the future.

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