I contacted the National MG Foundation today to see if they had made any response to Sanofi regarding the discontinuance of Mytelase. They have made no response and indicated that they have not heard from any Mytelase users expressing concern about the discontinuance. They took my information and noted my concern. I would urge other Mytelase users to call the foundation amd make their voices heard. Their phone number is 800-541-5454. I would also suggest that if you belong to a local MG Chapter to ask them to lend their support by contacting the National Foundation on our behalf.
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Originally Posted by sorrentome
Your message regarding submitting an IND to have Mytelase imported is extremely interesting. I have referred my doctor's office to it. Perhaps you could expand on your efforts & give some help.
-Should each person having an IND application submitted talk to the FDA to get their verbal agreement to accept it? Is there a particular dept or person to contact?
-Should Sanofi be requested to accept any shipments? Would they hold it only for a certain person and/or pharmacy?
-If your application is accepted is there a possibility of getting a general idea of the language your doctor's office used in completing the application? This could be quite helpful to others in their filings.
Thank you for all your work, for sharing it and for giving some of us a ray of hope.
PS-I will speak to my local MG chapter & see if they can get the national foundation to help in this matter.
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