Hi, my name is EllieP! Does anyone have experience of Neurofibromatosis 1 (NF1)? — Scope | Disability forum
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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.


  • chiarieds
    chiarieds Community member Posts: 15,458 Disability Gamechanger
    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. :)
  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,462 Disability Gamechanger
    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? 
    National Campaigns Officer, she/her

    Join our call for an equal future.
  • EllieP
    EllieP Community member Posts: 3 Listener
    Thanks, @Teri_Scope.  I'm really just seeking to connect with persons who have experience with NF1.


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