tag:blogger.com,1999:blog-7535774120903384819.post7484457907960089718..comments2023-12-27T00:26:40.602-08:00Comments on Possibilities: NACFC2016--Notes from Day 1Rebeccahttp://www.blogger.com/profile/01834134399653596127noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-7535774120903384819.post-35329463422549332492017-01-12T01:44:39.130-08:002017-01-12T01:44:39.130-08:00armani exchange
cleveland cavaliers jerseys
bronco...<a href="http://www.armaniexchangeoutlet.us" rel="nofollow"><strong>armani exchange</strong></a><br /><a href="http://www.clevelandcavaliers.us.com" rel="nofollow"><strong>cleveland cavaliers jerseys</strong></a><br /><a href="http://denverbroncos.jerseyscheap.us.com" rel="nofollow"><strong>broncos jerseys</strong></a><br /><a href="http://cincinnatibengals.jerseyscheap.us.com" rel="nofollow"><strong>bengals jersey</strong></a><br /><a href="http://www.nikeblazerlow.fr" rel="nofollow"><strong>nike blazer pas cher</strong></a><br /><a href="http://www.eccoshoesoutlet.us" rel="nofollow"><strong>ecco shoes outlet</strong></a><br /><a href="http://www.christian-louboutinoutlet.us" rel="nofollow"><strong>christian louboutin shoes</strong></a><br /><a href="http://www.michaelkorsoutlet-clearance.us.com" rel="nofollow"><strong>michael kors outlet clearance</strong></a><br /><a href="http://www.armaniexchangeoutlet.us" rel="nofollow"><strong>armani exchange outlet</strong></a><br /><a href="http://www.pandora-jewelryoutlet.name" rel="nofollow"><strong>pandora jewelry</strong></a><br />Anonymoushttps://www.blogger.com/profile/15852402536415399775noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-39674964458177247492016-11-16T20:34:05.202-08:002016-11-16T20:34:05.202-08:00I'm wondering if you heard any discussion abou...I'm wondering if you heard any discussion about anti-inflammatory medicines at the cf conference. My daughter is looking at a phase 2 study that is an anti-inflammatory drug. She recently was on VX661 but it was ineffective for her mutation. We are anxious for any study medicine that might help her preserve lung function as she is about 55% right now. Thanks for any input.Amy I.https://www.blogger.com/profile/03761954850538761476noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-22766091753180551482016-10-28T20:38:15.022-07:002016-10-28T20:38:15.022-07:00I loved the report on the Kalydeco. My son also w...I loved the report on the Kalydeco. My son also was able to start it at age 4 (2014). I pushed the doctor to test the fecal elastase...and it came back at greater than 500! They and we were in complete shock! The dietician said she has only ever told one other person to stop taking enzymes. Mason has been enzyme free since June 2016. We have also stopped taking two other drugs since then as well! This drug is truly amazing!!!Sarahttps://www.blogger.com/profile/14736144348104422938noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-15510690664252240212016-10-28T20:33:15.609-07:002016-10-28T20:33:15.609-07:00Thank you for sharing, as always. You are my go-t...Thank you for sharing, as always. You are my go-to for NACFC reports!Angiehttps://www.blogger.com/profile/01645965847345245535noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-25982655416860481662016-10-28T12:20:32.283-07:002016-10-28T12:20:32.283-07:00How wonderful that, even though your son has a cor...How wonderful that, even though your son has a corrector, you keep working to bring one to everyone. Thank you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-91905078125105632692016-10-28T08:02:59.396-07:002016-10-28T08:02:59.396-07:00Thank you for your comments. I share your concern ...Thank you for your comments. I share your concern about price and sustainability of these amazing new developments. As the Volunteer National Advocacy co-chair for the CFF, I can say that this issue absolutely a priority for the public policy Dept. There is a robust ongoing conversation with the FDA, lawmakers, as well as payers. This is at the heart of my advocacy work, and I will be attending a meeting later today on this very important topic of access. Thanks again for reading and commenting!Rebeccahttps://www.blogger.com/profile/01834134399653596127noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-23830549407401167292016-10-28T08:02:40.498-07:002016-10-28T08:02:40.498-07:00Thank you for your comments. I share your concern ...Thank you for your comments. I share your concern about price and sustainability of these amazing new developments. As the Volunteer National Advocacy co-chair for the CFF, I can say that this issue absolutely a priority for the public policy Dept. There is a robust ongoing conversation with the FDA, lawmakers, as well as payers. This is at the heart of my advocacy work, and I will be attending a meeting later today on this very important topic of access. Thanks again for reading and commenting!Rebeccahttps://www.blogger.com/profile/01834134399653596127noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-19551216784008517542016-10-28T03:01:33.079-07:002016-10-28T03:01:33.079-07:00Hello! Ultra Rare mutation CF Mom here...please pl...Hello! Ultra Rare mutation CF Mom here...please please keep ears open for more talk about what you mention "FDA approval and insurance coverage". Who is working on this piece of the puzzle? All this data is no good without a game plan signed off on by FDA. Some of us are already pursuing our own in vitro data and need a way to make it work for us. Thanks!Goonie Mom Christiehttps://www.blogger.com/profile/17536525275683804520noreply@blogger.com