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Please help us, thank you @SkyNews we need the people support, sign our petition - we need to get over 100k. #precisionmeds4cf #cysticfibrosis petition.parliament.uk/petiti… twitter.com/skynews/status…
@frank_broadcast This I did not know! Frank do me (another!) favour and share this petition for #orkambinow again please, we need 39,000 more signatures for another debate in Parliament for these live saving #cysticfibrosis drugs on NHS. Thank you so much for your support petition.parliament.uk/petiti…
hope my little princess loves me just as much as I do her.. and understands the decisions I’ve made.. to give her a better and healthier life.. #CysticFibrosis
Deborah had a double lung transplant in October due to #cysticfibrosis. & shares her story & gratitude to her courageous donor family who agreed to #organdonation ahead of her interview on @BBC3CR at 1pm today. facebook.com/30838101964460… pic.twitter.com/6RUSG76yZD
Going live with a special #Charity stream for Carter, an 11 y/o boy from Maine who lives with #CysticFibrosis. All cash donations from today's stream will be passed on to his family to help them out however possible. twitch.tv/whaddup
@VertexPharma you'd massively help the negotiations if you submitted new data for #Orkambi & #SymkeviNow - a few weeks worth of data is not very helpful to @NICEcomms evaluation. Come on, do that to do a deal! #OrkambandCFpipelinedrugs #CysticFibrosis #OrkambiNow @MattHancock twitter.com/ToriaCFMum/sta…
Can’t actuall see this movie about #cysticfibrosis bc it’s too close to home. Anyone who doesn’t know much about CF should def go see it. My husband has been fighting cystic fibrosis since birth. We are still waiting for the cure. #CureCF youtu.be/XtgCqMZofqM @FiveFeetApart
@melissamcewen @AlanLevinovitz Don't fit in? Curious mind here... So my Son has #CysticFibrosis already marked as leprosy among the public...but homeschooling him, to protect his already immune compromised system, now makes him even more of an outcast to fit it? Interesting take. TBH...