DDF508 & Pipeline Drugs (Kalydeco) anyone participated? Experiences?

[JennyCoulon]

I am just wondering if anyone with the double D508 have been in any of the trials with Kalydeco or any other pipeline drugs like Kalydeco. My two boys, 13 & 7 have this mutation and I am just wondering what people's experiences have been. Thanks,

 

[TreasureGoddess]

I've just heard talk about new studies reaching clinical trial 3 level. My son is a double D508 so I'd love to hear about opinions and if you can tell a difference yet too!

 

[Chrissyb]

I don't have that one but I wish I did so I could take that

 

[JennyCoulon]

Just to clarify we aren't in any of the studies I was just looking for people who possibly are and could maybe let us know how the experience is going; is it helping, have your PFT's gone up, side effects, etc. It is pretty exciting news that they are working on this particular gene mutation.