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    • #12058

      US President Trump recently signed the Right to Try legislation into law, but not everyone is happy about it. While some rare disease patients and advocates are thrilled about Right to Try, others are concerned that the lack of FDA oversight for new and unapproved rare disease treatments could leave patients and their families vulnerable.

      Read more about this story and let us know what you think here: “US ‘Right to Try’ Law Meets with Mix of Praise and Criticism, Including Among Those with Rare Diseases

      What do you think about the Right to Try law? Will this news impact your decision about which treatments you explore now or in the future? Why or why not?

    • #12077
      Kathleen Sheffer
      Participant

      I can see both sides. My life was saved when my doctor prescribed Sildenafil before it gained FDA approval to treat PAH. I just hope that patients who begin RTT therapies will do so under advisement and supervision of their doctor. Will be interesting to see how it plays out.

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