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Tamoxifen

Started by Galia Ben Ishay in Research. Last reply by Galia Ben Ishay on Sunday. 38 Replies

Emflaza (aka deflazacort) Approvals

Started by Keith & Jill VE in General Discussion. Last reply by David on Saturday. 1 Reply

Latest Activity


Staff
Annie Kennedy posted a blog post

UPDATE - Action Alert: Your Calls Are Still Needed! Tell Your Senator to Vote NO on the Senate Health Bill

Yesterday the Senate voted 51-50 to move forward on healthcare reform legislation -- but no specific bill was actually voted on. The Senate has committed to passing something this week. Once passed, the Senate bill will then have to return to the House for passage or conferencing (if it differs from the House version). Then it…See More
28 minutes ago
Michelle Meunier favorited Annie Kennedy's blog post ACTION ALERT: Tell Your Senator to Vote NO on Today's Healthcare Repeal!
22 hours ago

Staff
Annie Kennedy posted a blog post

ACTION ALERT: Tell Your Senator to Vote NO on Today's Healthcare Repeal!

Today, the Senate is expected to start floor debate and motion for a vote on either the Better Care Reconciliation Act (BCRA), which would repeal and immediately replace the Affordable Care Act (ACA), or the Obamacare Repeal Reconciliation Act (ORRA), which would repeal portions of the ACA after a two-year delay. The Senate is working to pass whichever bill is more likely to attain 50 votes.  The Congressional Budget Office released reports last week that said …See More
yesterday
Hamed AL-Jabili shared a profile on Facebook
Monday
Hamed AL-Jabili shared a profile on Facebook
Monday
ven favorited Galia Ben Ishay's discussion Tamoxifen
Sunday
Galia Ben Ishay replied to Galia Ben Ishay's discussion Tamoxifen
"Dear Gloria, I give him 20mg every evening. I don't know if you can get it without prescription. Good luck, Galia."
Sunday
Gloria Chen replied to Galia Ben Ishay's discussion Tamoxifen
"Dear Galia Ben Ishay,   Can you please share to me the dosage of Tamoxifen to your son?  My son is now 49.4 kg, and he is 9.  I would like to know how many mg my son should take per day.  Thank you so much for your information.…"
Sunday
Galia Ben Ishay replied to Galia Ben Ishay's discussion Tamoxifen
"Yes, I've understood it's for ALL mutations."
Sunday
Gabija commented on PPMD's group Duplications
"My two sons age are 8 month and 9 years. Duplication of Exons 18.I am a carrier..;("
Sunday
Gabija joined PPMD's group
Sunday
David replied to Keith & Jill VE's discussion Emflaza (aka deflazacort) Approvals
"United Healthcare has been reviewing my sons app for a month, no response. Ive little hope they will approve."
Saturday
Keith & Jill VE posted a discussion

Emflaza (aka deflazacort) Approvals

Just curious - has anyone in the PPMD community received insurance approval for Emflaza (deflazacort) in the US?  We're currently working through the process, but no surprise, the insurance company has already announced a blanket rejection of the drug, given the insane pricing.I hope that PPMD is speaking directly with the executives at PTC to stop this unethical price gouging.See More
Friday
Shady posted a discussion

Abs workouts for duchenne

Anyone knows are abs exercises useful or not recommended for children with duchenne? and If useful ,how many repetitions and time weekly?
Friday
Profile IconPaul and Kerri Kratky and Trevor Smith joined PPMD Community
Friday
Sai Chand. Gurujala replied to Galia Ben Ishay's discussion Tamoxifen
"So it is applicable for duplication exons as well right?"
Friday
 
 
 

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