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Hi, my name is EllieP! Does anyone have experience of Neurofibromatosis 1 (NF1)?

EllieP
Community member Posts: 3 Listener
Hello, I'm pleased to join this forum. I have siblings on Special Guardianship who both have disabilities as a result of a genetic condition Neurofibromatosis (NF1). I'd like to know if there's anyone in this forum with experience around NFI. Thanks in advance.
Comments
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Hello @EllieP - & welcome to this supportive community. Whilst I know about Neurofibromatosis (I'm a long-retired physio so have read about this), I don't have experience of it, tho I believe we have had some members with NF1. Have you looked at this charity too? Please see: https://nervetumours.org.uk/Most of our members have many different disorders, but we're always here for support, & sometimes may have answers for any query you have, so please let us know if we can help in any way. We're pleased to have you join too.
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Welcome to the community @elliep
Thanks for joining, and for sharing a bit about yourself and your siblings.
I don't have any personal experience of NF1, but I hope that another member with experience will come along soon. I've tweaked the title of your post and moved it into a different category so that it'll be easier for other members to find.
Did you have a specific question, or are you just looking for people who can understand what you and your family are going through? -
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