Here are some more links where you might find useful information: The Virtual Center for Velo-Cardio-Facial Syndrome is an open access, internet-based charitable organisation that will provide information to people whose lives have been touched by VCFS and who are seeking information about the management of the syndrome. There is no charge for this service, which will be funded by voluntary donations. Making Contact (a service from Contact a Family where you can search for other 22q DS families, discuss specific issues in forums and network). They also have a guide to finding information and support when your child has additional needs. Patches Heart Group is based in Sutton in Ashfield, and is run by heart parents, for heart parents. Lagan's Foundation - The UK's first and only National Charity to provide support and at home care to families with babies and children under the age of 5 diagnosed with acquired or Congenital Heart Defects OR feeding difficulties. CLEFT is a charity which aims to research the unanswered problems in improving care for children born with cleft lip and palate. They aim to push the boundaries of conventional treatment by funding research into improving operating techniques and by looking at the underlying reasons for cleft deformities. One of their current projects is a 22q11 study. SNAP 16+ is an introductory agency placing experienced Personal Assistants (PA's), buddies, carers, enablers and facilitators to teenagers and young adults with additional needs. After Diagnosis This guide has been written by the rare chromosome charity Unique, to help signpost families whose children have just been diagnosed with either global developmental delay and/or a rare chromosome disorder. The guide is aimed at parents whose children are 4 years and under (pre-school age). It provides basic information to the services available to families with a young child with additional needs. Housing Options Advice Service for information about housing options for people with learning disabilities. The Counselling Directory aims to be the leading service for providing counselling advice and information - connecting those in distress with the largest support network in the UK. It is a confidential service that encourages those in distress to seek help. The directory contains information on many different types of distress, as well as articles, news, and events. All counsellors are qualified and have insurance cover or proof of membership with a professional body. |
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