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spreading the word

alawlor Message
5 Oct 2009, 05:45 PM

it would be good to get 22q info put on RareShare by a medical expert, any ideas on how to go about doing that anyone?
Eric Message
5 Oct 2009, 06:09 PM

If anyone knows of a medical expert that would be willing to be the "Community Expert" for the 22q11.2 Deletion Syndrome Community then they would be able to answer questions and post relevant information. Any ideas?
alawlor Message
5 Oct 2009, 06:53 PM

Hi Eric, I see that one of RareShare's newest members is a clinical geneticist, perhaps if experts of this type are joining they might be willing to share their expertise if asked. Is there a mechanism whereby the question can be put to them?
Eric Message
5 Oct 2009, 07:28 PM

We are always looking for "Community Experts" and if anyone is interested in becoming one, please email us at Once a community expert has been approved for a community, they are able to answer questions and their answers are posted for all community members to see. Since community experts are instructed not to give individual medical advice, rather to answer general questions and direct members to helpful resources, the community expert does not have to be a medical professional (in some communities it is a knowledgeable patient or the head of a national organization representing a particular disorder). I hope this helps.
alawlor Message
5 Oct 2009, 08:35 PM

it does indeed Eric, and thank you very much. Interesting that knowledgeable patients or heads of organizations are deemed as community experts.I find that lots of parents are very expert.
Lindsey Message
7 Oct 2009, 09:46 PM

maybe someone could contact CHOP....
alawlor Message
7 Oct 2009, 09:58 PM

....or the vcfsef
lesley1924 Message
8 Apr 2011, 02:00 AM

Dr. Sprintzen in NY? I believe that's how his name is spelled. He's been conducting studies on VCFS for almost 15 years at Upstate U in NY. (My sister, who has VCFS, has been a part of the study since she was 3... she is 17 now.)