Max Appeal! www.maxappeal.org.uk
You will be able to click on hyperlinks to other useful sites and will be able to download information or place an information request on line.
Velo Cardio Facial Syndrome Educational Foundation
This site is run by the VCFSEF, Syracuse, USA which is headed by Dr Robert Shprintzen who is credited as being one of the first to establish a syndromic pattern to this set of symptoms and give it the title of Velo-Cardio-Facial syndrome.
More information from:
http://www.vcfsef.org
Children's Hospital of Philadelphia - USA
When you enter this site do a search for "DiGeorge" and then it will bring up about 4 very good explanation pages. CHOP is one of the major centres for DiGeorge syndrome, indeed Dr DiGeorge himself is an endocrinology (now emeritus) consultant here.
More information from:
http://www.chop.edu
UK Chat lists
1. Go to site www.jiscmail.ac.uk
2. Where it says "enter the list name" type "vcfs-uk" and click on "go"
3. There will be step by step instructions of how to join - you will then be able to send messages and receive them form the whole group of members who have also registered on the chat list.
More information from:
http://www.jiscmail.ac.uk
USA Chat lists
1. Send an e-mail message to listserv@maelstrom.stjohns.edu
2. Leave the Subject line blank
3. In the body of the message (on the first line, no line space etc) part write:
"subscribe vcfs yourfirstname yourlastname"
4. You will get confirmation messages immediately and will start receiving messages from the next day - it works like the UK one but there are daily e-mails as it's more established.
More information from:
mailto:listserv@maelstrom.stjohns.edu
