Cystic Fibrosis Albania

08/09/2025

14/08/2025

22/07/2025

Të mos harrojmë përpjekjet që bëhen për aksesin ndaj modulatorëve.
Të mos harrojmë se Shqipëria është vendi i vetëm që në listën e rimbursueshme ka vetëm creon 10000/25000 dhe ndonjë antibiotik.
Jo inhalatorë
Jo vitamina për fibrozën cistike
Jo ilaçe që lidhen me sëmundjen
Jo trikafta/kaftrio/Kalydeco
Jo pulmozome

Edhe sa kohë prindërit do heshtin dhe do bëjnë pakt me heshtjen e tyre?!

Gayle Pledger is the co-founder of campaign group Vertex Save Us and parent to a daughter with CF. In this blog, she writes about how she became involved with the campaign for global access to Kaftrio and what it means to her, and shares an update on her fight to get cystic fibrosis treatments inclu...

22/07/2025

"This fight is deeply personal to me because I’ve stood where so many of these CF parents are now – knowing that a treatment exists that could save your child’s life, yet being completely unable to access it."

Gayle Pledger is the co-founder of campaign group Vertex Save Us and parent to a daughter with CF. In a recent blog, she writes about how she became involved with the campaign for global access to Kaftrio and what it means to her, and shares an update on her fight to get cystic fibrosis treatments included on the World Health Organization’s (WHO) Essential Medicines List.

Click the link to read the blog.

➡️ https://www.cysticfibrosis.org.uk/news/pushing-for-global-access-to-cf-treatment

22/07/2025

At many major cystic fibrosis conferences including in Vienna, Glasgow, Phoenix, Boston, and now Milan - Vertex Pharmaceuticals takes centre stage to promote their image. But away from the spotlight there are thousands of desperate families still locked out of accessing lifesaving medicine, Trikafta...

10/06/2025

Do të mendohet gjithnjë se është e pamundur derisa të kryhet

09/06/2025

Ndërkohë që flitet se mosha mediane e fibrozave që ka lindur duke filluar nga viti 2020 (viti që përkon me futjen në treg të modulatorëve trikafta Kalydeco) do të jetë 65 vjeç, në Shqipëri flitet me statistikat e vjetra, flitet ende për mosha pediatrike

According to 2024 Patient Registry data, the median predicted age of survival for people with cystic fibrosis born in the U.S. between 2020-2024 is estimated to be 65 years of age.

We are proud to see this figure reach 65 years and celebrate this continued improvement. However, we recognize that many people with CF, particularly those who do not benefit from modulators and those living post-transplant, may have shorter lives. In addition, this prediction does not apply to people with CF born before 2020.

You have helped us achieve this milestone, but we are far from done.

We remain laser-focused on developing transformative treatments and finding a cure for all people with cystic fibrosis. We won’t settle for anything less.

06/06/2025

Cmimi i trikaftas mund të jetë 5000 eur në vit por ata e shesin për 300.000 eur në vit. Kjo është ajo që po bën Vertex

06/06/2025

Në shenjë simbolike dërguam lule për të gjithë fibrozat cistike që kanë vdekur dhe për ata që mund të vdesin ndërkohë që jemi në pritje të të sjellin modulatorët në Shqipëri! Edhe sa fëmijë duhet të vdesin që të vijnë ilaçet në vendin tonë?!