• The consumer defense association Test-Achats (Belgium) announced Wednesday the filing of a complaint against the pharmaceutical company Biogen before the Belgian Competition Authority. It denounces an abuse of a dominant position in the marketing, at a price considered exorbitant, Spinraza, a drug against spinal muscular atrophy, a rare and…[Read more]

  • Which improvement do you feel ?

  • mehdi replied to the topic SPINRAZA FOR FOREIGNER in the forum Spinraza 7 months, 2 weeks ago

    thank you

    I agree with you Lupa. Spiranza price is unethically high ” maybe it’s theft or murder !!! …” there is one SMA for each 10 000 person so the campany can  earn about 22.901.200.000 Dollar just in USA that’s unfair even if injections are literally ongoing for life (RYAN). At this price we can build factories , hosptals or small…[Read more]

  • mehdi posted an update 7 months, 2 weeks ago

    Great

    i added you on facebook

    • mehdi replied to the topic SPINRAZA FOR FOREIGNER in the forum Spinraza 7 months, 2 weeks ago

      Thank you guys

      Rayan Iam very sad for your bad experience with Biogen. Unfortunately Spiranza is the unique hope For SMA patients.

      Do you know why the price is horribly expensive ?

       

       

    • mehdi posted an update 7 months, 2 weeks ago

      Dear Kevin

      thank you for your prompt attention to this matter

      Well I’m MEHDI a SMA 2 senior ( 29 years old lol) from Morocco. I want to get Spiranza however the cost is unethically hign. I’am ready to pay the first dose but I can’t buy the other injections.

      Besides, I like to watch soccer, hearing good music, playing chess annd somtimes i…

      [Read more]

      • Very cool! I’m a big movie/music/book guy as well. And I’m always down to discuss writing.

        And your English is fine. Glad to have you here!

    • mehdi replied to the topic SPINRAZA FOR FOREIGNER in the forum Spinraza 7 months, 2 weeks ago

      Hi DEANN,

      many thanks for your pretty advices. I work on finance topics ( you can see my articles on the Net).

      Well I hope to  hit the pause button of SMA monster. but the expensive price of Spiranza is real obstacle. I think the unjustified and inhuman price should be negotiated.

      Best wishes,

    • Dear Friends

      I’m Mehdi SMA 2 From Morocco 30 years old. I’m PHD student. I’m so happy  to Talk to SMA Community.

      Unfortunately my disease evolved this last year which jeopardizes my health and my professional career.

      So Could you reply to my questions “which hospitals or associations offer Spiranza at low cost? is there a discount for low and…[Read more]

    • mehdi became a registered member 7 months, 2 weeks ago

      • Hey Mehdi, welcome! I’m Kevin Schaefer, one of the forum moderators, and I have SMA Type 2. Please let me know if you have any questions, and feel free to introduce yourself in the welcome forum. Thanks for joining us!

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