The Virtual Center for Velo-Cardio-Facial Syndrome

The Virtual Center for Velo-Cardio-Facial Syndrome




New Feature: Virtual Meetings
The Virtual Center for Velo-Cardio-Facial Syndrome is beginning a new feature, its Virtual Meeting. Just as we bring our professional opinions and knowledge to you via the internet and other electronic methods so that the important information you need comes to you rather than you coming to us, we will now bring presentations from many of the foremost authorities in their fields with extensive experience with VCFS by two approaches. First, videos of superb presentations that are derived from their personal research and experience followed by periodic live question and answer sessions on specific dates and times. These question and answer sessions will also be available for people to hear on our web site. The dates and times of these live sessions will be posted on our web site and we will make our best efforts to account for differences in time zones so that people anywhere in the world will be able to access them. In order to access these sessions, we will require you to register on our web site and send us a completed acknowledgment form if you have not already done so. Although our services are completely free of charge, we would kindly ask for a voluntary donation from those of you who access these presentations and attend the Q&A sessions to defray the costs of bringing them to you via our charitable organization. Donations can be sent via PayPal by clicking on the PayPal button that appears on all pages of our web site, or by sending a check to our mailing address provided on our Contacts page. We welcome your feedback regarding the Virtual Meeting. The first presentation is now posted. You may access it as frequently as you would like and it will remain online indefinitely and will be added to our Journal on the Journal Page in the near future.


Our Services
The Virtual Center for Velo-Cardio-Facial Syndrome, Inc. is an open-access 501(c)3, internet-based charitable organization that provides personalized information to people whose lives have been touched by VCFS and who are seeking applicable research and clinical expertise regarding the management of the syndrome. There is no charge for this service, which is funded by voluntary donations.


The Center’s staff includes experts with extensive experience with VCFS who are available individually or in a conference format with registrants to the web site and their local physicians, speech-language pathologists, dentists, educators, etc. The entire staff is comprised of people who have seen, collectively, thousands of children and adults with VCFS. We have multiple options for communicating with you. Our preferred method is by video conference using your computer and a webcam. For conversations between two people, we can use Skype® or Face Time® (Mac, iPhone 4, iPod Touch, or iPad users only), or for conference calls involving up to six people, ooVoo®. If you do not have high speed (broadband) internet access or a webcam, we can use the telephone or email.


This web site has a number of useful files you may wish to download. On this page you will find a list of all of the anomalies and their relative frequency that have been reported or observed in VCFS. On the Downloads page you will find files with recommendations and site-related instructions. On the Journal page, you may download growth charts specific to VCFS. We hope you will find these features to be useful.


To Use Our Services:

Register on the web site We will keep your personal information confidential and not share it with anyone outside of our organization.

Carefully read and sign the acknowledgement form. Carefully read and sign our acknowledgement form. This form signifies your understanding that we are not considered to be responsible for your health care, but that we are simply functioning as providers of information that may prove useful in terms of dealing with your needs and questions. After downloading this form, sign it, and return it to us by scanning it and sending it back by email. If you cannot scan and email the form, you may fax or mail it.

Complete the appropriate 'history' form. If you are contacting us about velo-cardio-facial syndrome, download the VCFS history form (the file downloads as a Word document), fill it out as instructed and return it to us. If you are not contacting us about VCFS, then download the craniofacial history form, fill that out and return it to us. This will allow us to provide you with information most relevant to your situation..

































Drs. Golding-Kushner, Ysunza, and Shprintzen speaking at a meeting in Rome, Italy.