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What do we want? Orkambi!
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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

**ALL SOCIAL MEDIA PLATFORMS**
Please share #Okambi petition on Twitter, Linked In, Google+, YouTube, Pinterest, Instagram, Tumblr.
MAKE FACEBOOK POSTS PUBLIC... TO REACH MORE PEOPLE
Don't apologise for asking. Why wouldn't a friend or family member support the #CysticFibrosis cause? petitionhttps://petition.parliament.uk/petitions/209455
#cysticfibrosis
#Lungs
#Breathe
#OrkambiNow
#CFTrust
#CFAware
#CFAwareness

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Conventional CF treatments target the symptoms of CF, precision medicines like Orkambi tackle the cause of the condition. Though Orkambi is not a cure, it has been found to slow decline in lung function, the most common cause of death for people with CF, by 42%
petition.parliament.uk

Sharing for our friends in the UK who are STILL fighting for Orkambi access. You can help by sharing or tweeting.

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BBC South East

A new mum from Sittingbourne says she might not see her son grow up, unless she receives a life-changing drug.

Posts

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! 💪🏼

#OrganDonation #LiveLifeGiveLife

Hopefully, Orla will get that life-saving call before Christmas.

Cystic fibrosis campaigner Orla Tinsley has called on the public to become organ donors in the run up to Christmas as she revealed she is currently on life support.
breakingnews.ie

Hi all, let's help our CF friends in Wales by signing this petition...

https://www.assembly.wales/…/e-p…/Pages/petitiondetail.aspx…

​We call on the National Assembly for Wales to call for a resolution to ongoing negotiations between NHS Wales, the All Wales Medicines Strategy Group, the Welsh Health and Specialised Services Committee and Vertex Pharmaceuticals regarding access to the cystic fibrosis medicine, Orkambi, as a mat...
assembly.wales

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

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Please support this important CF awareness campaign for Cystic Fibrosis Ireland. You'll catch it in cinemas nationwide and also please share on social. Thanks for supporting our #fighttobreathe

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Cystic Fibrosis Ireland

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.]

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Really interesting read...

Vertex Pharmaceuticals' new $200,000-a-year cystic fibrosis drug could help 90% of patients breathe. It's an amazing--and profitable--innovation. But will that windfall spur the 28-year-old startup to do it again?
forbes.com

Game on! This guy is mega. What a role model 💪🏼

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24hrs4cf was live.

LIVE - #24hrs4cf begins!

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.

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The results were from two phase 2, or midstage, clinical trials, and one phase 1 study evaluating three different triple-combination regimens. The studies tested three different experimental drugs, each on top of a regimen of two other drugs.
cfireland.ie

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?

Hope you get the call soon Orla. #BeatCF #NinjaOn

https://www.gofundme.com/orlatinsley2017

Since her teenage years, Orla Tinsley has been a tireless campaigner for people with cystic fibrosis. Her journalism and activism drew much-needed national attention to the sub-standard level of care for adult patients in Ireland, and led to the creation of a dedicated CF unit at St Vincent's Hos...
gofundme.com

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

Cystic fibrosis patients with genetic mutations that resist other treatments gained in lung function in trials of three new Vertex combination therapies.
statnews.com

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.

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Vertex Pharmaceuticals today announced that the Italian Medicines Agency (Agenzia Italiana del Farmaco, or AIFA) has agreed to reimburse ORKAMBI
cfireland.ie

Sincerely hope the UK protests went well today.

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Daisy Evans Journey

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

#orkambi #orkambinow #bloodontheirhands
#timeforchange #stoptheclock
#cysticfibrosis

Www.facebook.com/fordaisyevans

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Anyone want to tell us their initial reactions to starting??

Siobhan Brophy to YesOrkambi

just wondering how it's going? have many people started Orkambi and how are they finding it?

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.

https://patientworthy.com/…/uk-cystic-fibrosis-sufferers-f…/

Orkambi (ivacaftor/lumacaftor) is the second precision medicine to be licensed for use in the UK by people with cystic fibrosis. The catch? It is not currently provided by the National Health Service (NHS), except in rare cases on compassionate grounds. Our partner Breathe With Me Strawfie Challenge...
patientworthy.com
YesOrkambi shared a link.
June 2, 2017
Good News on Orkambi and Kalydeco CFI has confirmation from both Vertex and the HSE that the final contracts for Orkambi and Kalydeco extension and
cfireland.ie