Search results

Florence and the Machine - "Between Two Lungs". My daughter (aged 22 with CF) thinks of this as her CF anthem. We would like to use it to make a short film/promo re getting Kalydeco for Australians on our national pharmaceutical benefits scheme...anyone know Florence?

Thank you for your very helpful information 'Aboveallislove'. I had come across the CFF centres just by looking around the CFF website but I hadn't read it properly to realise they are 'approved' by the CFF. We will have minimal requirements from the US prescribing physician as our sole purpose...

Thank you for your very helpful information 'Aboveallislove'. I had come across the CFF centres just by looking around the CFF website but I hadn't read it properly to realise they are 'approved' by the CFF. We will have minimal requirements from the US prescribing physician as our sole purpose...

thank you Jenny! Your message of support is great.

thank you Jenny! Your message of support is great.

I am seeking advice re CF clinics in LA. Due to the declining health of my daughter we are going to buy Ivacaftor (Kalydeco) until the Australian Government funds it. Vertex will not accept our Australian Drs prescription and we need to travel to the US to have a prescription issued by a US Dr...

I am seeking advice re CF clinics in LA. Due to the declining health of my daughter we are going to buy Ivacaftor (Kalydeco) until the Australian Government funds it. Vertex will not accept our Australian Drs prescription and we need to travel to the US to have a prescription issued by a US Dr...

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...

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...

https://www.facebook.com/groups/343431685698805/ I have started a Facebook Group called "Kalydeco for Australians" - as a central place for gathering information and looking at how we can lobby effectively. Karen

https://www.facebook.com/groups/343431685698805/ I have started a Facebook Group called "Kalydeco for Australians" - as a central place for gathering information and looking at how we can lobby effectively. Karen

thank you GenH - we are in Australia and we would like to access Kalydeco right now - even if the cost is enormous! Our doctor has been following it up and will help us with any access issues. If you want to email me we can try and help each other and form some sort of group. my email address is...

thank you GenH - we are in Australia and we would like to access Kalydeco right now - even if the cost is enormous! Our doctor has been following it up and will help us with any access issues. If you want to email me we can try and help each other and form some sort of group. my email address is...

thank you...your words are so painful for me to read - I was hyper vigilant (exercise, antibiotics, drugs, clinic appointments, etc)  until my daughter reached 18 and then I avoided the issue in response to her new found independence (due to my inability to make any difference to her...

thank you...your words are so painful for me to read - I was hyper vigilant (exercise, antibiotics, drugs, clinic appointments, etc) until my daughter reached 18 and then I avoided the issue in response to her new found independence (due to my inability to make any difference to her...

thank you...your words are so painful for me to read - I was hyper vigilant (exercise, antibiotics, drugs, clinic appointments, etc) until my daughter reached 18 and then I avoided the issue in response to her new found independence (due to my inability to make any difference to her...

Sorry Joanna I have just found this after searching through the posts. I am very interested in what you have to say and your advice is invaluable. I will send you a message. Karen

Sorry Joanna I have just found this after searching through the posts. I am very interested in what you have to say and your advice is invaluable. I will send you a message. Karen

Sorry Joanna I have just found this after searching through the posts. I am very interested in what you have to say and your advice is invaluable. I will send you a message. Karen

In reply to Joanna. I am interested in helping you motivate CF australia to Lobby the government to speed approval. I rang them yesterday and I got an uninformed person who knew nothing at all about VX-770. Possibly there are some more informed people in the organisation. If we want to make it...