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Keith & Jill VE's Discussions (67)

Discussions Replied To (58) Replies Latest Activity

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

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

7 Nov 9
Reply by jiasusa5

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

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

1 Sep 24
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 to Emflaza (aka deflazacort) Approvals

7 Nov 9
Reply by jiasusa5

"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

"We just returned from Cincinnati Childrens and we will be switching our 10-year-old…"

Keith & Jill VE replied Aug 2, 2014 to What Shouid I Use, Idebenone or COQ10?!!!

7 Aug 5, 2014
Reply by Nadja

"Hi Rahul, Our son is currently on deflazacort, idebenone and several supplements (c…"

Keith & Jill VE replied Jul 29, 2014 to Does Idebenone have something to do with behaviours and cognitive issues?

10 Jul 30, 2014
Reply by Rahul Deshpande


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