MAX APPEAL DISCUSSION FORUM
Click the link above to join the Max Appeal Yahoo! group, created in January 2007. This new group will be moderated by Max Appeal. Please note that as with all discussion forums Max Appeal is not responsibe for the content in the group. Please use the above link to join. If you already have a Yahoo! ID, you can sign in to Yahoo! and add this group to "My Groups" using the same link above.

CaF
Contact a Family is the umbrella charity for all charities for children with a disability. You will find many of their publication helpful, including the directory of conditions. This is a useful source of information for parents and professionals alike

CCNA
Congenital Cardiac Nurses Association

Children
The 'umbrella' charity for all charities for children with heart conditions. Around 23 organisations form the federation, these include support groups for the heart units and condition related groups (such as Max Appeal!). Lots of information about heart conditions can be found along with support and activities.

CHOP
The Children's Hospital of Philadelphia is ranked among the leading paediatric hospitals and research facilities in the world. They have the only full multidisciplinary clinic in the US and have lots of really useful and easy to understand information. Max Appeal is fortunate to have very good links via Donna McDonald McGinn at CHOP.

Eurordis
Max Appeal is a member of Eurordis, the European rare Disorders group.

Genetic Alliance UK
Formerly Genetic Interest Group

Heartbeat NI
Established for parents of children with heart conditions in Northern Ireland by people with a wealth of experience. They also raise money to support Clarke Clinic in Belfast

HeartLine Association
For children with heart conditions and their families

Hypoparathyroidism UK
HPTH UK is a national voluntary organisation working to make life better for all those with Hypoparathyroidism & other rare parathyroid conditions.

Institute of Child Health - Great Ormond Street
This information sheet explains about 22q11 deletion and what it could mean for your child. It also gives suggestions for how you can ensure the best treatment and support for your child through Great Ormond Street Hospital

ITP Support
Idiopathic Thrombocytopaenic Purpura is a blood disorder in which the body's immune system destroys the platelets in the blood. The ITP Support Association provides patient support, advice on referrals and a telephone network with other sufferers or parents.

Totonto Sick Kids Hospital
useful multi-discilinary advice!

Argentina
Familias 22Q11.2 D.S./VCFS - Spanish language VCFS site for Argentina!

Australia (New South Wales)
VCFS & 22q11 Foundation of NSW (Australia) Registered Charity CFN13849, ABN 22 379 450 116 Supporting those affected by deletion 22q11 Useful information in pdf format for families and local support. Contact: Lucy Jackson: secretary@vcfsfa.org.au

Australia (Queensland)
The Velo Cardio Facial Syndrome Foundation Queensland was established to help and support groups of VCFS sufferers and their families, with the view to social contact, sharing information and educating people about VCFS. (This is an Aussie language site, mate!

Belgium
VECARFA Belgie, (Dutch language).

Belgium
Belgique - Relais 22 (site francophone) - Belgian French language site (en cours de construction).

Canada
- Chromosome 22 Central - English language. C22C are multinational, with representation as far off as Chile! You may see some suspiciously similar wristbands on their site, but of course you can get top-quality ones from us back here in Blighty!!!

France
Generation 22 - French support group, hosts with VCFSEF of the Strasbourg 2006 meeting. French language site.

Germany
Deutschland - KiDS-22q11 - German 22q11 support group (German language) covering Germany, Austria and Switzerland

Italy
AIdel22 - Italian 22q group - Italia - Associazione Italiana Delezione Cromosoma 22

Netherlands
Nederlands - VCFS.nl Het Oudernetwerk VCFS - Dutch language support group.

Norway
Norwegian DiGeorge supoprt site.Norge - Foreningen DiGeorge Syndrom

Sweden
Sverige - Foreningen catch 22 22q11 deletionssyndrom - The Swedish 22q11 support group!

Switzerland
A Swiss 22q11 site, French language and all that cool mountain air....

The 22q11 Ireland Support Group
Congratulations to Anne Lawlor for setting up her Irish charity!

USA
The International 22q11.2 Deletion Syndrome Foundation - This is a new group set up in the USA, it has the backing of Donna from CHOP.

USA
The Velo-Cardio-Facial Syndrome Educational Foundation, Inc. An international not-for-profit, self-help organisation dedicated to providing support and information to individuals who are affected by Velo-Cardio-Facial syndrome, their families, physicians and other practitioners.

USA - Tonya & Teralynn's 22q11.2 support group
An American site created by parents of a 22q child featuring photos, videos, blogs and a forum all in one: "I created this group for anyone that has a loved one with the deletion".

CLAPA
Cleft Lip and Palate Association

Unique
Unique is the organisation for rare genetic disorders. Beverley Searle is the CEO and has an amazing database at her fingertips... if you are looking for something like 22q11.2 del but not exactly, then this is the link for you!