"I called Masters and they do not ship any more. Planning to get it from India as it should be possible with a US doctors prescription. "
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Ankur Handa
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- Sunnyvale, CA
- United States
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Emplaza in US
Started this discussion. Last reply by Ankur Handa Oct 6, 2018. 2 Replies 0 Favorites
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"Is it an opton to come to Europe and bring back supply for some time?"
Emplaza in US
The cost of the medication is more than $10,000 for a 30 day supply. Insurance has also rejected it. So, wanted to check if there is a better way to get the deflazacort in the US if we can't get it from Emplaza?Any suggestions?See More
Profile Information
- Age(s) of child(ren)/individual(s) with Duchenne:
- 4-6
- City:
- Sunnyvale, CA
Comment Wall (3 comments)
- At 8:30am on September 10, 2011,
Ambrish Kapadia said…
Hi Ankur
I am from Mumbai , India , my 4 yr 4 mt old has deletions of 52 to 54 so he is eligible for exon skipping 55 . There is a Helderman's data on the net which has data collection of different BMDs with different deletions and how they have behaved through out their life with those deletions . Which deletions as stastical data shows have been quite milder form of BMD . My email id is matex1884@gmail.com . Pls email be so i can forward this data to you as well
Bye Ambrish
- At 7:31pm on May 17, 2010,
Darcy Tumminello said…
- Good Luck, She is the best! You'll know for sure you're in good hands with the care your son will receive! We travel from PA, I had to find out what everyone was talking about and now I'm a follower.
- At 12:00pm on May 17, 2010,
Karen flor said…
- Hi Ankur....I haven't been to Dr Wong yet, but like you I feel she's the best. I'm in the process of setting up an appointment for my son..and its more involved than just calling and setting a date... the phone #'s are 513-803-3000 and fax 513-803-3300. When I first called I spoke with a Sarah who took some of my info and emailed me various forms{info sheet, doctor release, ect} You will then need to return these forms to them....They will need the DNA exam your son did, plus biopsey,ekg and ecocardiagram if done, immunization records, growth chart and CPK exam possibly more depending on what your son has done..Also a Wendy will call to give more information. Good luck Karen
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