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  • ToriMom's Avatar
    01-08-2018, 01:48 PM
    ToriMom replied to a thread Tezacaftor/Ivacaftor in Adults
    Thank you ...I’m so glad you responded! It gives me some hope that you are doing well. I really need to believe there is hope for my daughter and her...
    3 replies | 460 view(s)
  • ToriMom's Avatar
    01-04-2018, 09:48 PM
    ToriMom replied to a thread Tezacaftor/Ivacaftor in Adults
    I was desperate to get my daughter onto one of those clinical trials. I was not successful. I’d love to know how you are doing. Are you a...
    3 replies | 460 view(s)
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2 Visitor Messages

  1. Oh this sounds great!
    I have never had a Facebook account but maybe I will use my husband's or just create one for CF research. Ill let you know, and THANK YOU
  2. I run a secret group on Facebook for people with CF and NTM, mainly abscessus. If you want to join let me know. You will have to be friends with me or someone else in the group for us to add you, but you can unfriend once in. It is a super supportive, knowledgeable group. Mainly mom's.
    Lori Devoti
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