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This is Thalassemia Patients and Friends,
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Author Topic: Question From Bluebird Bio About Long Hospital Stay Experience  (Read 3326 times)
Andy Battaglia
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« on: August 17, 2015, 12:38:47 PM »

Bluebird Bio is running trials of gene therapy for thalassemia and wants to help patients have a good experience during their participation in trials. Bluebird has asked me to pose this question, so they can get feedback from patients so that patients participating in trials can have an excellent experience.
“If you’ve had a long hospital stay in the past, what information, tips or resources (e.g. listings of restaurants, and other conveniences) would have been helpful to you and your family?”
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Andy

All we are saying is give thals a chance.
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« Reply #1 on: August 18, 2015, 06:35:38 AM »

Andy,

is it for the patient who is going for trials?
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Sharmin
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« Reply #2 on: August 19, 2015, 03:36:02 PM »

Information regarding accommodations for family accompanying the participant would be helpful. 
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Sharmin
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« Reply #3 on: August 20, 2015, 02:33:41 PM »

As a Minor without transfusions I would have a question that is partially for Bluebird and also for Andy or Majors/Minors who had transfusions:
  • Does the "paleness" disappear after a transfusion and while it "lasts"?
  • Did it disappear in patients receiving gene therapy? Did the treatment cause other positive changes in their appearance, e.g. less "yellowish" etc.?

Sorry if those questions are inappropriate in any way or in the wrong topic!
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Canadian_Family
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« Reply #4 on: August 27, 2015, 02:43:13 PM »

Sorry, didn't come across this topic before.

I would be interested to know (Activities for kids, family accomodations (if travelling), out of pocket expenses, transportation facilities around).

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Regards.
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