What is the cost of translarna?

What is the cost of translarna? Anybody have any idea??

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Permalink Reply by Peter on May 16, 2015 at 5:08pm

The cost in Europe about 3800 Euro, 30 sachets of Translarna 125 mg.

Permalink Reply by Trinh Nguyen on May 17, 2015 at 11:05pm

Cost in Germany:

1 box of 30 tablets 125mg : 3822 Euro

1 box of 30 tablets 250mg : 7588 Euro

1 box of 30 tablets 1000mg : 30180 Euro

Cost is sky-high.

Permalink Reply by Elie Feghali on May 18, 2015 at 2:13am

It is an unreasonable cost!!

Can anyone pay that price??

Permalink Reply by Trinh Nguyen on May 18, 2015 at 3:11am

I can't imagine who can pay.

Permalink Reply by Elie Feghali on May 18, 2015 at 3:17am

In my case i need for each day 8 tablets 250 mg and 1 tablet 1000 mg which means 3029.5 Euro per day!!!

Permalink Reply by Nadja on May 18, 2015 at 2:08pm
How does translarna work?
Permalink Reply by Trinh Nguyen on May 18, 2015 at 9:48pm

Hi Nadja,

My son has been in phase 3 - double blind and phase 3-extension. I guess he was in placebo group in phase 3 due to his decline. But since phase 3-extension (all take drug), the decline seems slow down, he almost does not fall.

Trinh

Permalink Reply by wainaina muiruri on June 3, 2015 at 4:19am

Hello Peter.I trust you are well with your loved ones.How long is Translarna to be taken?For life or just for a period?Thanks.

Permalink Reply by Elie Feghali on June 5, 2015 at 2:17am

For life i think


wainaina muiruri said:

Hello Peter.I trust you are well with your loved ones.How long is Translarna to be taken?For life or just for a period?Thanks.

Permalink Reply by Trinh Nguyen on June 5, 2015 at 4:03am

Yes, for life.

Permalink Reply by wainaina muiruri on June 5, 2015 at 6:46am

Well,i think i talk for most of us when i say not many will afford that high a cost.But let us remain hopeful.

Permalink Reply by Mena Shaher on April 22, 2016 at 10:12am
Hello hope you are all well, Do you how kids outside EU and UK can get the drug plz? Thanks

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