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New Facebook CDH Groups
NEW FACEBOOK CDH SUPPORT GROUPS:
CHERUBS has created 2 new private Facebook groups for CDH Families:
For Grieving Families - https://www.facebook.com/groups/grievingcdhfamilies/
For Survivors & Families - https://www.facebook.com/groups/survivorscdhfamilies/
Because this group is not filtered well, and because families of survivors and grieving families want their own safe places to talk, we created these 2 new groups.
They will NOT replace our forums here.
YOU MUST BE A MEMBER OF OUR FORUMS (in good standing) to be approved to join one of the other 2 groups. Not a member? Join for free at http://www.cdhboards.org/
Families only please.
Rules will be posted to keep out any drama or negativity and we will have medical professionals in our groups to keep them safe and free from the awful medical advice so often found on FB.
Please be patient with us as we vet members into these groups as it may take a little time. Make sure your forums profile is up to date and we can approve you much quicker.
It is our goal to create safe, private and responsible places of CDH support for families on Facebook. We hope that you will join us!
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When Dawn says this group is not filtered, she means you can still happen upon threads for both survivors and angel families here on the forums. So many members have mentioned the ease of facebook and we are trying to keep with the times, but please know this is not a replacement for the forums. The forums have been around a long time and we still want families to use them....in my opinion they are safer. These groups are one for survivors to share and one for grieving families to share. At this time, we will add all expecting families or babies currently in the NICU once the NICU journey is over, for we don't want to be adding and removing in these groups if we can help it. We are making sure members accounts are in good standing and families are added to the correct groups.
Please make sure profile information is up to date and approval into these groups will happen quickly.
If you have any questions please let us know.
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Hello! When I click the link for the survivors, it tells me the content is temp. unavailable. This happened all yesterday and now this evening. I can click and be directed to the grieving families link okay though. Anyone else? Thanks :)
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https://www.facebook.com/groups/survivorscdhfamilies/
I will look into Louise. I am not sure what is going on. I need to try from my husband's facebook account and see what happens (since he is not a member of the group yet)...not sure. Will let you know.
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That link worked. I also received your invite and am just waiting approval. Thank you very much :)
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Just added you Louise.
The groups privacy are marked secret, which is why I thought maybe the link was not working. I am learning all this facebook things as I go, LOL!
So I sent you an invite, knowing you would for sure see it that way.
Should be set to go.
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If you are unable to see the new groups on facebook. Message me your email address and I can send you an invite to join one of the pages.
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With the group marked as secret, I think it won't let members find it and I have brought that up with the boards. I did send you an invite Sean to the email we have on file for you here at CHERUBS to join the group, hope that works.
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The list to join these groups is getting long! Please make sure you are a member of CHERUBS. You can join at www.cdhboards.org.
Please make sure to fill in all fields, this includes all the questions in regards to your cherub, for so many of you are leaving out dates and city/town of birthplace.
At this time we are only adding members that have a complete and up to date profile. If you have any questions, please email the CPAB at cpab@cherubs-cdh.org.
If you have requested to join these groups and have not heard back from us, please see your other folder on facebook, for you will have an email from either Dawn or I on why the request was not approved and what info. we are missing from you.
To make changes to your profile or to add missing info., please log-in and go to Settings in the upper right hand corner. Click on Settings, then go to Edit Profile on the left hand side of the screen. From there your profile form will pop up and you can make the necessary changes. Then hit submit changes at the bottom of the screen. If you have updated info., please email the CPAB that you have done this so we can get you added to these groups.
Thank you!!
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What about women pregnant with babies who have cdh?
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All of the Facebook Support Groups have been moved to secret, therefore they no longer can be found in search menus. This privacy setting gives our families a safe place to talk and ask questions. We had to do this, for the requests were getting out of hand and many people had not been affected by CDH or were not members of CHERUBS.
If you mark "yes" to join our facebook groups upon registering, you will be sent an invite to join. These are sent by facebook and will come as a facebook notification to your inbox. However, they will show the cherubs volunteer that sent them. Right now, they may read from Tracy Meats and the subject line be, Tracy Meats wants you to join.... If you do not see an invite in your inbox, do check your spam/junk folders. At anytime you have questions or want an invite sent and you are a registered member of CHERUBS and your profile is up to date, please email tracy.meats@cherubs.org.
We now have 4 groups. At anytime you need to be added to another group, please let us know. You can email me or send the CPAB a message at cpab@cherubs.org. These groups are more active than the forums here.
Our groups our as follows:
CHERUBS Main Support group - it includes all members
CHERUBS CDH Survivor and Family Group - it includes survivors and families once the NICU journey is over
CHERUBS Grieving Group - this groups is a group just for our grieving families
CHERUBS Survivor Group - this group is solely for survivors, teenagers that request to join, we must get parents permission.
