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    • #27160
      Jen Cueva
      Moderator

      Have y’all been keeping updated on the Right to Try Act? Living with PH,this is an important act for me. Not just for the PH community but for those with all long-term chronic illnesses that need additional treatments.

      Often, treatments are in the clinical trial phase for years. This Act will help to access these treatments while still in the clinical trial phase.

      If you want to learn more, check out this link. FDA.Gov. This site offers more information on the updated expanded access, etc.

      Please take a look, and let’s talk about this. Do you think this act will benefit you or your loved one in some way?

    • #27161
      Colleen Steele
      Keymaster

      This is an important topic @jenc. Thanks for posting about it. I believe (hope) the Right To Try Act will help move medical advancements for rare diseases forward faster. That being said I also don’t want trials to be rushed but if one is showing a lot of promise, why delay the help it can provide? If a patient has run our of options and there is a clinical trial that just might bring them some hope, I say let them have it.

    • #27175
      Jen Cueva
      Moderator

      Hi @colleensteele, I agree. I think it is useful in ways and others like you mention, I hope that they will not miss steps trying to speed things up. Hope is what I like most about this. So many in the rare disease communities will benefit from this act.

      It is often a catch-22, like most things, right?

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