G551D mutation and results from starting Kalydeco

mima63

New member
Hi, I am in Australia and desperately trying to source Kalydeco for my 22yo daughter who has one copy of the G551D mutation. I am interested to hear of personal experiences from people in the US (and other countries) with taking the drug if you a copy of G551D.
We have started a group to try and lobby for the Australian Government to approve this drug. It is a facebook group called <strong>Kalydeco for Australians</strong>. Please ask to join the group if you are an Australian with an interest in having Kalydeco approved or you think you can help our lobbying of the Australian Government in some way. We think it is in the interest of all Australians with CF and their families (regardless of mutation) to support the lobbying for Kalydeco because it will pave the way for subsequent drugs of a similar class when they become available.
Karen
 

mima63

New member
Hi, I am in Australia and desperately trying to source Kalydeco for my 22yo daughter who has one copy of the G551D mutation. I am interested to hear of personal experiences from people in the US (and other countries) with taking the drug if you a copy of G551D.
We have started a group to try and lobby for the Australian Government to approve this drug. It is a facebook group called <strong>Kalydeco for Australians</strong>. Please ask to join the group if you are an Australian with an interest in having Kalydeco approved or you think you can help our lobbying of the Australian Government in some way. We think it is in the interest of all Australians with CF and their families (regardless of mutation) to support the lobbying for Kalydeco because it will pave the way for subsequent drugs of a similar class when they become available.
Karen
 

dasjsmum

New member
HI Karen

I've joined the group already (we're in Australia). My son has been in the 770 trial for the last two plus years. He is 32. If you want to use stories for lobbying I feel confident that he would personally share with you and the group. I have added him to the group. He still receives the drug on open label.

Look for my name it's Joanna <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dasjsmum

New member
HI Karen

I've joined the group already (we're in Australia). My son has been in the 770 trial for the last two plus years. He is 32. If you want to use stories for lobbying I feel confident that he would personally share with you and the group. I have added him to the group. He still receives the drug on open label.

Look for my name it's Joanna <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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