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Clinic Advisory Committee
- Thread starter CFTwins
- Start date
BabyBeauty
New member
We had our first meeting last night. All we did was introduce ourselves, set ground rules, and a mission statement. We will be meeting once a month. Next month will be when we really start brainstorming ideas/projects.
BabyBeauty
New member
We had our first meeting last night. All we did was introduce ourselves, set ground rules, and a mission statement. We will be meeting once a month. Next month will be when we really start brainstorming ideas/projects.
BabyBeauty
New member
We had our first meeting last night. All we did was introduce ourselves, set ground rules, and a mission statement. We will be meeting once a month. Next month will be when we really start brainstorming ideas/projects.
BabyBeauty
New member
We had our first meeting last night. All we did was introduce ourselves, set ground rules, and a mission statement. We will be meeting once a month. Next month will be when we really start brainstorming ideas/projects.
BabyBeauty
New member
We had our first meeting last night. All we did was introduce ourselves, set ground rules, and a mission statement. We will be meeting once a month. Next month will be when we really start brainstorming ideas/projects.
U
usedtobeinca
Guest
We participate in our clinic's patient/family advisory committee (CFPFAC - long acronym).
We met monthly beginning last Sept to get things off the ground and now meet quarterly. The first thing we did was prioritize issues and refine our group's focus. Like many advisory groups we've developed a 'new patient' binder to assist families and patients with organizing their new lives with CF. We also a hosted a CF roundtable last spring where CF patients, families and clinic docs spoke to their experiences with CF and upcoming clinic and research news. We're also putting together a CF information clearinghouse for our clinic patients and working out a peer-to-peer training program for patient and family support.
Our experience has been great so far. Good luck with your group.
We met monthly beginning last Sept to get things off the ground and now meet quarterly. The first thing we did was prioritize issues and refine our group's focus. Like many advisory groups we've developed a 'new patient' binder to assist families and patients with organizing their new lives with CF. We also a hosted a CF roundtable last spring where CF patients, families and clinic docs spoke to their experiences with CF and upcoming clinic and research news. We're also putting together a CF information clearinghouse for our clinic patients and working out a peer-to-peer training program for patient and family support.
Our experience has been great so far. Good luck with your group.
U
usedtobeinca
Guest
We participate in our clinic's patient/family advisory committee (CFPFAC - long acronym).
We met monthly beginning last Sept to get things off the ground and now meet quarterly. The first thing we did was prioritize issues and refine our group's focus. Like many advisory groups we've developed a 'new patient' binder to assist families and patients with organizing their new lives with CF. We also a hosted a CF roundtable last spring where CF patients, families and clinic docs spoke to their experiences with CF and upcoming clinic and research news. We're also putting together a CF information clearinghouse for our clinic patients and working out a peer-to-peer training program for patient and family support.
Our experience has been great so far. Good luck with your group.
We met monthly beginning last Sept to get things off the ground and now meet quarterly. The first thing we did was prioritize issues and refine our group's focus. Like many advisory groups we've developed a 'new patient' binder to assist families and patients with organizing their new lives with CF. We also a hosted a CF roundtable last spring where CF patients, families and clinic docs spoke to their experiences with CF and upcoming clinic and research news. We're also putting together a CF information clearinghouse for our clinic patients and working out a peer-to-peer training program for patient and family support.
Our experience has been great so far. Good luck with your group.
U
usedtobeinca
Guest
We participate in our clinic's patient/family advisory committee (CFPFAC - long acronym).
We met monthly beginning last Sept to get things off the ground and now meet quarterly. The first thing we did was prioritize issues and refine our group's focus. Like many advisory groups we've developed a 'new patient' binder to assist families and patients with organizing their new lives with CF. We also a hosted a CF roundtable last spring where CF patients, families and clinic docs spoke to their experiences with CF and upcoming clinic and research news. We're also putting together a CF information clearinghouse for our clinic patients and working out a peer-to-peer training program for patient and family support.
Our experience has been great so far. Good luck with your group.
We met monthly beginning last Sept to get things off the ground and now meet quarterly. The first thing we did was prioritize issues and refine our group's focus. Like many advisory groups we've developed a 'new patient' binder to assist families and patients with organizing their new lives with CF. We also a hosted a CF roundtable last spring where CF patients, families and clinic docs spoke to their experiences with CF and upcoming clinic and research news. We're also putting together a CF information clearinghouse for our clinic patients and working out a peer-to-peer training program for patient and family support.
Our experience has been great so far. Good luck with your group.
U
usedtobeinca
Guest
We participate in our clinic's patient/family advisory committee (CFPFAC - long acronym).
We met monthly beginning last Sept to get things off the ground and now meet quarterly. The first thing we did was prioritize issues and refine our group's focus. Like many advisory groups we've developed a 'new patient' binder to assist families and patients with organizing their new lives with CF. We also a hosted a CF roundtable last spring where CF patients, families and clinic docs spoke to their experiences with CF and upcoming clinic and research news. We're also putting together a CF information clearinghouse for our clinic patients and working out a peer-to-peer training program for patient and family support.
Our experience has been great so far. Good luck with your group.
We met monthly beginning last Sept to get things off the ground and now meet quarterly. The first thing we did was prioritize issues and refine our group's focus. Like many advisory groups we've developed a 'new patient' binder to assist families and patients with organizing their new lives with CF. We also a hosted a CF roundtable last spring where CF patients, families and clinic docs spoke to their experiences with CF and upcoming clinic and research news. We're also putting together a CF information clearinghouse for our clinic patients and working out a peer-to-peer training program for patient and family support.
Our experience has been great so far. Good luck with your group.
U
usedtobeinca
Guest
We participate in our clinic's patient/family advisory committee (CFPFAC - long acronym).
<br />
<br />We met monthly beginning last Sept to get things off the ground and now meet quarterly. The first thing we did was prioritize issues and refine our group's focus. Like many advisory groups we've developed a 'new patient' binder to assist families and patients with organizing their new lives with CF. We also a hosted a CF roundtable last spring where CF patients, families and clinic docs spoke to their experiences with CF and upcoming clinic and research news. We're also putting together a CF information clearinghouse for our clinic patients and working out a peer-to-peer training program for patient and family support.
<br />
<br />Our experience has been great so far. Good luck with your group.
<br />
<br />We met monthly beginning last Sept to get things off the ground and now meet quarterly. The first thing we did was prioritize issues and refine our group's focus. Like many advisory groups we've developed a 'new patient' binder to assist families and patients with organizing their new lives with CF. We also a hosted a CF roundtable last spring where CF patients, families and clinic docs spoke to their experiences with CF and upcoming clinic and research news. We're also putting together a CF information clearinghouse for our clinic patients and working out a peer-to-peer training program for patient and family support.
<br />
<br />Our experience has been great so far. Good luck with your group.
M
Mommafirst
Guest
My husband and I just went to our first meeting this week. Our CFFC (CF Family Council) does membership by invites and the invites only go out once a year. We were asked to attend a few meetings to decide if we want to be permanent members.
One of the things they are working on including hosting an insurance night where questions on choosing plans and what to look for etc. are dealt with. Its actually tonight -- I'll let you know how it goes.
They are also working on a mentor program for newly diagnosed families to be paired with parents who are recently past that stage (whether it be adult or child diagnosis).
The CFFC also gets to send a delegate to the CF Monthly Team meeting to report back to the group/speak for the group. As well as to the Hospital's Patient Advisory Council.
Our meetings are funded by some pharmaceutical company (varies each time) who provides dinner for everyone in exchange for 10 minutes of our time to hear about their drug. This week we had a woman talk about enzymes and the standardization process the government is doing right now. Apparently the shelflife on enzymes is so unstable that if they are too "new" they could acutally contain as much as 130% of the medicine in each capsule from the prescription. If you/your kid take(s) 4 pills at each meal you may be over dosing them -- and then if the package is too "old" then you might be underdosing them. All because the enzymes decline so dramatically in efficiency over time!! So it was an interesting talk, plus we got free dinner <img src="i/expressions/face-icon-small-smile.gif" border="0">
One of the things they are working on including hosting an insurance night where questions on choosing plans and what to look for etc. are dealt with. Its actually tonight -- I'll let you know how it goes.
They are also working on a mentor program for newly diagnosed families to be paired with parents who are recently past that stage (whether it be adult or child diagnosis).
The CFFC also gets to send a delegate to the CF Monthly Team meeting to report back to the group/speak for the group. As well as to the Hospital's Patient Advisory Council.
Our meetings are funded by some pharmaceutical company (varies each time) who provides dinner for everyone in exchange for 10 minutes of our time to hear about their drug. This week we had a woman talk about enzymes and the standardization process the government is doing right now. Apparently the shelflife on enzymes is so unstable that if they are too "new" they could acutally contain as much as 130% of the medicine in each capsule from the prescription. If you/your kid take(s) 4 pills at each meal you may be over dosing them -- and then if the package is too "old" then you might be underdosing them. All because the enzymes decline so dramatically in efficiency over time!! So it was an interesting talk, plus we got free dinner <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
Mommafirst
Guest
My husband and I just went to our first meeting this week. Our CFFC (CF Family Council) does membership by invites and the invites only go out once a year. We were asked to attend a few meetings to decide if we want to be permanent members.
One of the things they are working on including hosting an insurance night where questions on choosing plans and what to look for etc. are dealt with. Its actually tonight -- I'll let you know how it goes.
They are also working on a mentor program for newly diagnosed families to be paired with parents who are recently past that stage (whether it be adult or child diagnosis).
The CFFC also gets to send a delegate to the CF Monthly Team meeting to report back to the group/speak for the group. As well as to the Hospital's Patient Advisory Council.
Our meetings are funded by some pharmaceutical company (varies each time) who provides dinner for everyone in exchange for 10 minutes of our time to hear about their drug. This week we had a woman talk about enzymes and the standardization process the government is doing right now. Apparently the shelflife on enzymes is so unstable that if they are too "new" they could acutally contain as much as 130% of the medicine in each capsule from the prescription. If you/your kid take(s) 4 pills at each meal you may be over dosing them -- and then if the package is too "old" then you might be underdosing them. All because the enzymes decline so dramatically in efficiency over time!! So it was an interesting talk, plus we got free dinner <img src="i/expressions/face-icon-small-smile.gif" border="0">
One of the things they are working on including hosting an insurance night where questions on choosing plans and what to look for etc. are dealt with. Its actually tonight -- I'll let you know how it goes.
They are also working on a mentor program for newly diagnosed families to be paired with parents who are recently past that stage (whether it be adult or child diagnosis).
The CFFC also gets to send a delegate to the CF Monthly Team meeting to report back to the group/speak for the group. As well as to the Hospital's Patient Advisory Council.
Our meetings are funded by some pharmaceutical company (varies each time) who provides dinner for everyone in exchange for 10 minutes of our time to hear about their drug. This week we had a woman talk about enzymes and the standardization process the government is doing right now. Apparently the shelflife on enzymes is so unstable that if they are too "new" they could acutally contain as much as 130% of the medicine in each capsule from the prescription. If you/your kid take(s) 4 pills at each meal you may be over dosing them -- and then if the package is too "old" then you might be underdosing them. All because the enzymes decline so dramatically in efficiency over time!! So it was an interesting talk, plus we got free dinner <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
Mommafirst
Guest
My husband and I just went to our first meeting this week. Our CFFC (CF Family Council) does membership by invites and the invites only go out once a year. We were asked to attend a few meetings to decide if we want to be permanent members.
One of the things they are working on including hosting an insurance night where questions on choosing plans and what to look for etc. are dealt with. Its actually tonight -- I'll let you know how it goes.
They are also working on a mentor program for newly diagnosed families to be paired with parents who are recently past that stage (whether it be adult or child diagnosis).
The CFFC also gets to send a delegate to the CF Monthly Team meeting to report back to the group/speak for the group. As well as to the Hospital's Patient Advisory Council.
Our meetings are funded by some pharmaceutical company (varies each time) who provides dinner for everyone in exchange for 10 minutes of our time to hear about their drug. This week we had a woman talk about enzymes and the standardization process the government is doing right now. Apparently the shelflife on enzymes is so unstable that if they are too "new" they could acutally contain as much as 130% of the medicine in each capsule from the prescription. If you/your kid take(s) 4 pills at each meal you may be over dosing them -- and then if the package is too "old" then you might be underdosing them. All because the enzymes decline so dramatically in efficiency over time!! So it was an interesting talk, plus we got free dinner <img src="i/expressions/face-icon-small-smile.gif" border="0">
One of the things they are working on including hosting an insurance night where questions on choosing plans and what to look for etc. are dealt with. Its actually tonight -- I'll let you know how it goes.
They are also working on a mentor program for newly diagnosed families to be paired with parents who are recently past that stage (whether it be adult or child diagnosis).
The CFFC also gets to send a delegate to the CF Monthly Team meeting to report back to the group/speak for the group. As well as to the Hospital's Patient Advisory Council.
Our meetings are funded by some pharmaceutical company (varies each time) who provides dinner for everyone in exchange for 10 minutes of our time to hear about their drug. This week we had a woman talk about enzymes and the standardization process the government is doing right now. Apparently the shelflife on enzymes is so unstable that if they are too "new" they could acutally contain as much as 130% of the medicine in each capsule from the prescription. If you/your kid take(s) 4 pills at each meal you may be over dosing them -- and then if the package is too "old" then you might be underdosing them. All because the enzymes decline so dramatically in efficiency over time!! So it was an interesting talk, plus we got free dinner <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
Mommafirst
Guest
My husband and I just went to our first meeting this week. Our CFFC (CF Family Council) does membership by invites and the invites only go out once a year. We were asked to attend a few meetings to decide if we want to be permanent members.
One of the things they are working on including hosting an insurance night where questions on choosing plans and what to look for etc. are dealt with. Its actually tonight -- I'll let you know how it goes.
They are also working on a mentor program for newly diagnosed families to be paired with parents who are recently past that stage (whether it be adult or child diagnosis).
The CFFC also gets to send a delegate to the CF Monthly Team meeting to report back to the group/speak for the group. As well as to the Hospital's Patient Advisory Council.
Our meetings are funded by some pharmaceutical company (varies each time) who provides dinner for everyone in exchange for 10 minutes of our time to hear about their drug. This week we had a woman talk about enzymes and the standardization process the government is doing right now. Apparently the shelflife on enzymes is so unstable that if they are too "new" they could acutally contain as much as 130% of the medicine in each capsule from the prescription. If you/your kid take(s) 4 pills at each meal you may be over dosing them -- and then if the package is too "old" then you might be underdosing them. All because the enzymes decline so dramatically in efficiency over time!! So it was an interesting talk, plus we got free dinner <img src="i/expressions/face-icon-small-smile.gif" border="0">
One of the things they are working on including hosting an insurance night where questions on choosing plans and what to look for etc. are dealt with. Its actually tonight -- I'll let you know how it goes.
They are also working on a mentor program for newly diagnosed families to be paired with parents who are recently past that stage (whether it be adult or child diagnosis).
The CFFC also gets to send a delegate to the CF Monthly Team meeting to report back to the group/speak for the group. As well as to the Hospital's Patient Advisory Council.
Our meetings are funded by some pharmaceutical company (varies each time) who provides dinner for everyone in exchange for 10 minutes of our time to hear about their drug. This week we had a woman talk about enzymes and the standardization process the government is doing right now. Apparently the shelflife on enzymes is so unstable that if they are too "new" they could acutally contain as much as 130% of the medicine in each capsule from the prescription. If you/your kid take(s) 4 pills at each meal you may be over dosing them -- and then if the package is too "old" then you might be underdosing them. All because the enzymes decline so dramatically in efficiency over time!! So it was an interesting talk, plus we got free dinner <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
Mommafirst
Guest
My husband and I just went to our first meeting this week. Our CFFC (CF Family Council) does membership by invites and the invites only go out once a year. We were asked to attend a few meetings to decide if we want to be permanent members.
<br />
<br />One of the things they are working on including hosting an insurance night where questions on choosing plans and what to look for etc. are dealt with. Its actually tonight -- I'll let you know how it goes.
<br />
<br />They are also working on a mentor program for newly diagnosed families to be paired with parents who are recently past that stage (whether it be adult or child diagnosis).
<br />
<br />The CFFC also gets to send a delegate to the CF Monthly Team meeting to report back to the group/speak for the group. As well as to the Hospital's Patient Advisory Council.
<br />
<br />Our meetings are funded by some pharmaceutical company (varies each time) who provides dinner for everyone in exchange for 10 minutes of our time to hear about their drug. This week we had a woman talk about enzymes and the standardization process the government is doing right now. Apparently the shelflife on enzymes is so unstable that if they are too "new" they could acutally contain as much as 130% of the medicine in each capsule from the prescription. If you/your kid take(s) 4 pills at each meal you may be over dosing them -- and then if the package is too "old" then you might be underdosing them. All because the enzymes decline so dramatically in efficiency over time!! So it was an interesting talk, plus we got free dinner <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />
<br />
<br />One of the things they are working on including hosting an insurance night where questions on choosing plans and what to look for etc. are dealt with. Its actually tonight -- I'll let you know how it goes.
<br />
<br />They are also working on a mentor program for newly diagnosed families to be paired with parents who are recently past that stage (whether it be adult or child diagnosis).
<br />
<br />The CFFC also gets to send a delegate to the CF Monthly Team meeting to report back to the group/speak for the group. As well as to the Hospital's Patient Advisory Council.
<br />
<br />Our meetings are funded by some pharmaceutical company (varies each time) who provides dinner for everyone in exchange for 10 minutes of our time to hear about their drug. This week we had a woman talk about enzymes and the standardization process the government is doing right now. Apparently the shelflife on enzymes is so unstable that if they are too "new" they could acutally contain as much as 130% of the medicine in each capsule from the prescription. If you/your kid take(s) 4 pills at each meal you may be over dosing them -- and then if the package is too "old" then you might be underdosing them. All because the enzymes decline so dramatically in efficiency over time!! So it was an interesting talk, plus we got free dinner <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />