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    • #17202

      Novartis Gene Therapies announced that they have received Orphan Drug Designation from the FDA for OAV401, and that they expect to submit an Investigational New Drug (IND) application by the end of this year. An active IND will allow them to initiate the clinical investigation of OAV401 for the treatment of FA.

      Click below to read the full statement: http://bit.ly/2OsP8h5

    • #17204
      Karina Jeronimides
      Participant

      what does this drug do? never heard of it. could you please send a link to a description?

    • #17223
      Karina Jeronimides
      Participant

      Thank you Chrisina. All the doctors I’ve consulted about gene therapy tell me it is light years away, and that I’ll be dead or extremely affected by FA and wish I were dead by the time anything comes out of it. If your opinion is different, or if you think that Novartis might lead us to some relief sooner, please let me know. I’ve been living with this illness for more than 27 years, and the promise of so many treatments that do not work is really hard to tolerate. I feel like it’s time to go into hiding, forget that there could be a cure, and just try to be happy with the limitations that have been with me for so long.

      • #17225

        The FA Community has so many pharmaceutical companies on our side and working tirelessly and endlessly for a treatment or a cure. It may seem like a long road, but I see a bright future ahead!

        https://curefa.org/pipeline

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