Keith & Jill VE's Discussions (69)

Discussions Replied To (60) Replies Latest Activity

"Actually, quite the opposite!  Last year, PTC was charging my insurance company a ri…"

Keith & Jill VE replied Feb 14 to Emflaza (aka deflazacort) Approvals

12 Feb 14
Reply by Keith & Jill VE

"We haven't seen any additional side effects from Emflaza.  Unfortunately, my son (13…"

Keith & Jill VE replied Dec 30, 2017 to Emflaza (aka deflazacort) Approvals

12 Feb 14
Reply by Keith & Jill VE

"Glad to hear you are able to continue receiving the drug! Still puzzled by PPMD's d…"

Keith & Jill VE replied Oct 22, 2017 to Emflaza (aka deflazacort) Approvals

12 Feb 14
Reply by Keith & Jill VE

"Very nice analysis!  Great job! We gave our son (now 13) idebenone years ago until i…"

Keith & Jill VE replied Sep 24, 2017 to What is the recommended dosage for CoQ10 (Ubiquinone)

1 Sep 24, 2017
Reply by Keith & Jill VE

"We have made it through the approval process but I'm still furious about this whole…"

Keith & Jill VE replied Sep 16, 2017 to Emflaza (aka deflazacort) Approvals

12 Feb 14
Reply by Keith & Jill VE

"This is great news!   Forgive my ignorance, but would this help boys without a nons…"

Keith & Jill VE replied Apr 15, 2016 to NICE Recommends Translarna

5 Apr 16, 2016
Reply by Shelly

"Can you order it from Masters in the UK?  We're in the US and have been ordering it…"

Keith & Jill VE replied Sep 16, 2015 to About Deflazacort

6 Sep 18, 2015
Reply by Andrea Cleary

"Leresa, Very sorry to hear about your son's diagnosis.  Fortunately, you've found a…"

Keith & Jill VE replied Jun 27, 2015 to participating in research trials

13 Jul 9, 2015
Reply by Robin Taylor

"We received the same email. Fortunately, we didn't have any of the effected lots. I…"

Keith & Jill VE replied Mar 15, 2015 to Deflazacort 30 mg batch J021 and batch J028 recall email.

7 Mar 26, 2015
Reply by Dakota Ferrazzi

"It may be a bit of a journey for you, but many families use Dr. Wong at Cincinnati C…"

Keith & Jill VE replied Nov 11, 2014 to Looking for a Doctor

3 Nov 11, 2014
Reply by Grace D

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