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  1. M

    Vertex Patient Assistance Program

    I was on kalydeco which was approved for one of my genes but switched to Symdeko off label and vertex took me off their co pay assistance. However, they allowed me to go back on a few months later. It is in their best interest that you can stay on it so I would call and ask!
  2. M

    Vest? Symdeko?

    I am deeply sorry for the loss of your sister. I too lost a sister to CF and know how painful it is. I also have CF and could definitely use the Symdeko as my insurance company is not willing to cover it for me. I would gladly pay you to ship it. PM me if that would work for you. Thank you!
  3. M

    I am deeply sorry for the loss of your sister. I lost my sister to CF over 20 years ago and it...

    I am deeply sorry for the loss of your sister. I lost my sister to CF over 20 years ago and it is still painful. I also have CF and could use the Symdeko. I would be happy to pay you to ship it. Thank you!
  4. M

    Dr. Patrick Sosnay

    Has anyone on this forum seen this doctor at John's Hopkins and if so do you like him? Thank you!
  5. M

    Mass general adult clinic

    Does anyone go to mass general on this forum? I heard that Dr. Sicilian was part time now (? retiring soon) and they laid of a nurse practitioner. Are the doctors good there and if so which ones?
  6. M

    Fever and kalydeco...would love your thoughts

    It will be two years in October that I have been on kalydeco. I have the G551d mutation. However, I have not benefited in terms of improved Pft's or weight. In fact, I struggle more to keep them up! Over the past year I have run a low grade fever off and on (currently I have had a fever just...
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