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Email address for the fda committee
PADAC@fda.hhs.gov Dear Ms. Barnett, Yes, this is the email address to send all written submissions to for the May 12th PADAC meeting. Thank you, From: Jeanne Barnett [mailto:jeanne@medrise.com] Sent: Thursday, April 02, 2015 12:17 PM To: PADAC Subject: on line patient... -
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From Jenny she wants you to know...
These are from Jenny...she will comment! Salt and light, Jeanne -
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Jeannie or someone set up petition for FDA comment?
I think it is wonderful to give testimony in any case. I think we have to remember that the approval of this NDA (New Drug Application) makes a difference to insurance companies. Some are fearful that the off label prescription will not be paid by insurance. This drug is expensive! The... -
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Jeannie or someone set up petition for FDA comment?
Hi All, We did hear back from the committee and they are ready to receive "thousands" of email requests...as I originally asked them! They responded within an hour. This is the American way of government...lobbying for ourselves. They are all doctors so they know the science. In looking at... -
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Jeannie or someone set up petition for FDA comment?
Yes, it is important to tell our stories! They matter and numbers matter too. I think it is great that Above gave the sample letter. Personal stories along with the letter would be a good way to proceed. I always opt for email rather than snail mail, but both are warranted here. I have... -
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Jeannie or someone set up petition for FDA comment?
http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/Pulmonary-AllergyDrugsAdvisoryCommittee/ucm107568.htm this is the roster with their terms...it looks like they should understand this community! And know how important this request is! -
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Jeannie or someone set up petition for FDA comment?
Of course! Let me think about the best way to do this..Peter and Dank will have ideas too....this type of thing...comes through email all the time. We have members who may post ideas of the best software etc to use to get all the signatures together and to maintain anonymity while seeming to... -
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Take our new survey to see what the community needs most
We had a great response to our survey! There is still a little bit more time. Take the survey if you haven't taken it. YOUR VOICE MATTERS! We will be giving out the gift cards and tabulating the data later this week! THANK YOU! Salt and Light, Jeanne -
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Take our new survey to see what the community needs most
Reminder: If you haven't taken our survey...your voice won't be included in our future projects! I love the comment section..lots of neat ideas! Salt and Light, Imogene -
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My Church
(NEB) (VEST) I am starting to like this thread now that there are a fair number of responses... I am not brave believe me, i mostly go along believing God is everywhere and this community inspires me to reach and stretch in ways i never imagined...I admit I do need a church and community to... -
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Take our new survey to see what the community needs most
wow! We are closing in on 300 responses. We have a lot of work to do filtering all your requests! We are working hard to decipher our next paths in meeting all your needs and wants! We would still love to hear from you if you haven't taken the survey! Salt and Light, Jeanne -
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Kids with CF talking to other Kids with CF
Oh this reminds me of many years ago...we had a group of dads who would use our CHAT with the little ones sitting on their laps! We do have Zoom.us availability if we want to schedule a time to speak with some parents and children. This is no problem Let me think about how this could work...and... -
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Take our new survey to see what the community needs most
Remember the survey is on going so we can gather the most information possible. Thanks to the 230+ people who have weighed in! We would love to hear from more people as we get ready to set our paths for our 20th year! For us, it is all about the e-patient experience. Salt and Light, Jeanne -
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Take our new survey to see what the community needs most
Helen...sucha beautiful helpful map. I will link to it from our home page! Thanks for sharing it. Thanks everyone for taking the survey...We had a great response. We are leaving it open so you still have a chance to have your voices heard! Salt and Light, Jeanne -
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Our Survey is a Wikipedia of needs and wants of the community!
Have you taken the survey? Our team did a great job of including everything patients and caregivers could need and want! But we found out in the comment section..there are even more possibilities! Have you weighed in? https://www.surveymonkey.com/s/HY9CR7 -
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Take our new survey to see what the community needs most
Helen: I am sooo sorry...I remember Melissa did ask me and I said definitely New Zealand! Alas...the question never got changed. It slipped by us... We do have many members from New Zealand! Thank you... Imogene -
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Take our Survey and weigh in with what you need and want!
The response to our survey is wonderful! People have shared wonderful ideas for the needs and wants of this community. So creative and brilliant! Everything is important. Working together to make all these dreams come true is our goal! 200 have weighed in so far! Have you? -
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Take our Survey and weigh in with what you need and want!
Take our new survey to see what the community needs mostCFTechnology our 501 (C) (3) is looking to find out what our community wants and need most. Please take our survey (8-10 minutes). Let us know what you think! SURVEY Thank you, Salt and Light, Imogene - See more at...