Velo-cardio-facial syndrome (VCFS) is the most common genetic multiple anomaly disorder in humans. It is caused by a microdeletion of DNA from chromosome 22, typically encompassing approximately 40 genes. It is known by a number of other names, including DiGeorge syndrome, conotruncal anomalies face syndrome, Sedlačková syndrome, and more recently, 22q11.2 deletion syndrome. Approximately 200 distinct anomalies and disorders are associated with VCFS. Recent data has shown that more than 1 in every 1000 pregnancies carry the deletion from chromosome 22 that causes VCFS. Because so many problems can occur in people with VCFS, it is difficult to have all of the specialists with special knowledge of the syndrome needed for required diagnosis and management together in one location. The Virtual Center allows our experts to spread knowledge and information pertinent to individual cases anywhere in the world, thereby sharing expertise and educating local practitioners at the same time.
Because the information needed to assist in the management of VCFS is not available to everyone, many people turn to the internet or publications for information. However, most information obtained this way is general in nature and will not apply to everyone affected by the syndrome because of its highly variable presentation. Because our information is based on a detailed review of the histories and specific needs of individuals who register with us, The Virtual Center for Velo-Cardio-Facial Syndrome may be the solution to the need for more specific and useful information.
Q: Can the Virtual Center be accessed from Europe, Asia, Africa, and elsewhere?
A: Yes. Anywhere you can gain access to a computer connected to the internet or a telephone, you can reach us. The only minor obstacle might be the difference in time zones, but that can always be worked out.
Q: What if I do not speak English?
A: The easiest solution is to find someone locally to translate for you when we speak with you. If there is no one who can help, we will try to find someone to interpret. If you do not know of anyone locally who can help you, we can supply translators in multiple languages including Spanish, French, Italian, and several other languages. All you need to do is ask us.
Q: How will we meet face to face?
A: If you have a web video camera (webcam) built into your computer, tablet or smartphone, or attached externally to your computer, we will instruct you on how to participate in a video call. We use multiple systems for the video calls, but prefer GoToMeeting.com for quality, security and ease of use. The calls are completely free and there is no charge to you for using the software needed for the calls.
Q: Is it really free, or is there some catch you are not telling us about?
A: No catch! Everything we do is free. There is no charge for anything. Registration is free and does not obligate you in any way to use us or to pay us. We fund our charitable organization with voluntary donations from people willing to support our work. Also, we will not sell your name or email address or any other information about you to anyone or any organization. We will keep all of your information completely confidential.
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.