Cystic Fibrosis Forum (EXP)

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Recent content by Rummage

  1. R

    More about Kalydeco and other mutations

    http://luckycfmom.blogspot.com/2012/05/response-guided-therapy.html If you have not been following this blog, you might want to. There is a wealth of information in Rebecca's posts. Here is her latest: <h3 class="post-title entry-title"></h3> <h3 class="post-title entry-title">Response Guided...
  2. R

    CT scans and our little CFers

    Consider joining the facebook group DF508 and 621+1G>T
  3. R

    Kalydeco and Class IV Mutations

    CyrilCrodius, there is a facebook site just for people with those two mutations, called DF508 and 621+1G>T If you want to join the group, they could have some of the information you are looking for.
  4. R

    CT scans and our little CFers

    Since you mentioned 809 or 661, I am going to stir the pot a little and say that there are at least two people with Delta 508 and 621+1g>t who have benefited from Kalydeco alone.
  5. R

    CT scans and our little CFers

    Since you mentioned 809 or 661, I am going to stir the pot a little and say that there are at least two people with Delta 508 and 621+1g>t who have benefited from Kalydeco alone.
  6. R

    Kalydeco or VX-770 off lable use?

    I have a feeling there is some confusion because the G551D groups (Strive and Envision) also went into the PERSIST study extension and the results from Strive plus Persist were shown in poster 204 from the meeting. Again, if there is any more information out there, I am would love to read about it!
  7. R

    Kalydeco or VX-770 off lable use?

    I have a feeling there is some confusion because the G551D groups (Strive and Envision) also went into the PERSIST study extension and the results from Strive plus Persist were shown in poster 204 from the meeting. Again, if there is any more information out there, I am would love to read about it!
  8. R

    Kalydeco or VX-770 off lable use?

    I gave the link to the poster from the NACFC this year. If they are continuing this study in a phase III, I will look forward to reading about it.
  9. R

    Kalydeco or VX-770 off lable use?

    I gave the link to the poster from the NACFC this year. If they are continuing this study in a phase III, I will look forward to reading about it.
  10. R

    Missing posts

    I just tried to post a link to a paper, and it ended up blank. Could you fix it again?
  11. R

    Missing posts

    I just tried to post a link to a paper, and it ended up blank. Could you fix it again?
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