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Originally Posted by Mytelase_Alliance
Thank you very much for this information and for sharing your efforts here.
I am just beginning to work on this with my father, who is in need of Mytelase for his MG. We will also be following up with Sanofi directly and will share what we learn here.
The IMD may prove to be the most reliable avenue, so we look forward to hearing more about your effort, and perhaps we can work together on this.
I agree that the Myasthenia Gravis Foundation should get behind this effort with us and help facilitate this process. Let's continue to organize here and together perhaps we can have some leverage with the Foundation to request assistance with this effort.
As you express, there are others such as the elderly who are not able to advocate for themselves. Hopefully our efforts will benefit not only ourselves, but those and others who rely upon this medication. Uniting our efforts, may be the best way to insure access to this critical medicine for us all.
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I have continued with my efforts to get Santofi to import Mytelase from France where it is still being made. I am asking for a group IND for everyone who needs it.
Today I received a call from Santofi. At 2pm today, January 22, 2013 they are meeting to try and find a way to import the drug for all the patients who need it.
So what do you need to to? CALL SANTOFI!!! 1-800-981-2491
They need your name. they need to know how many patients need the drug so they can import enough drug.
This is NOT a done deal. Your call saying you need the drug will help those in charge see there is a need for this drug.
So please get on the phone and add your name to the list. Or the name of your loved one.
You need to say you need Mytelase, it seems many people are on it because they are allergic to Bromides, so no mestinon. that is my problem.
And make sure you give your name and a contact number.
I probably made that as clear as mud. Ask if you have questions.