The UK are still fighting for Orkambi. If you know anyone in the UK please ask them to sign this petition. It's not right that patients STILL don't have access. Let help the push for progress. #YesOrkambi
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Don't apologise for asking. Why wouldn't a friend or family member support the #CysticFibrosis cause? petitionhttps://petition.parliament.uk/petitions/209455
Sharing for our friends in the UK who are STILL fighting for Orkambi access. You can help by sharing or tweeting.
A new mum from Sittingbourne says she might not see her son grow up, unless she receives a life-changing drug.
Always fighting the greater fight; even when the chips are down. Please keep our CF ninja Orla Tinsley in your thoughts - the world is a better place with her in it. You can do this Orla! 💪🏼
Hopefully, Orla will get that life-saving call before Christmas.
Hi all, let's help our CF friends in Wales by signing this petition...
At times it felt like we would never get there, but our CF community is strong and undeterred by obstacles. Today some of us were honoured to meet with the President to mark the contributions of so many in raising awareness and furthering the fight for a better life for people with Cystic Fibrosis. #YesOrkambi #humbled
The average person takes 16 breaths per minute. A person with Cystic Fibrosis has to fight for every single one.
#FightToBreathe is a new 60-second advertisemen...t that graphically illustrates how life for a person with cystic fibrosis is exactly that ̶ a constant fight to breathe ̶ and invites audiences to experience that fight for themselves.
Support #FightToBreathe and the CF Community who fight for every single breathe by sharing this video, ttexting "Fight CF" to 50300 to donate €4* to Cystic Fibrosis Ireland or by donating online at www.cfireland.ie. [*Text costs €4. Cystic Fibrosis Ireland will receive a minimum of €3.25. Service Provider: LIKECHARITY. Helpline: 076 6805278.]
Really interesting read...
CFI's statement on the release from Vertex last week...
Further promising news from Vertex for those with F508del and one minimal function gene alteration.
This news release covers the VX-152; VX-440 and the VX659 th...erapies presently undergoing clinical trials. These show very exciting outcomes for those with F508del and one minimal function gene alteration.
Click the link below to read the full release.
Orla Tinsley has been a tireless campaigner for people with CF - she is a force for good, a force for change. Wouldn't it be great to give back in some small way and help her get a contingency fund together for after her double lung transplant?
My own daughter is in the 'tough to treat' category, so this article made my heart sing this evening 💜 And although our pipeline deal doesn't cover drugs for this patient group, I am filled with hope and positivity. #BeatCF
Italy has followed Ireland and other EU countries such as Germany, Austria, Denmark and Luxembourg in approving Orkambi for patients with CF who have the partic...ular genotype that stand to benefit from this important drug therapy.
CF Ireland hopes the efforts of the CF Trust in the U.K. will soon result in Orkambi being reassessed positively by regulatory authorities in London, Edinburgh and Belfast. There are many patients in Northern Ireland who could benefit from this drug and we offer our mutual support to them in particular at this time of uncertainty.
Sincerely hope the UK protests went well today.
So today is the day the uk cf community protest for access to Orkambi. This has been going on for far to long. Ireland recently granted access to patients and ...its about time the UK followed.
So as i cant be in London today to stand with everyone in person. I stand with you online with this.
Please like and share
It is just fantastic to hear that Orkambi and kalydeco are trickling out into the community! Congrats and good luck to those who are just starting. The UK, on the other hand, still have a battle on their hands. Let's support them as much as we can.