What care and support is available for those with deletion 22q11 syndrome?
Medical & Educational Organisations
22q Society
Mission: To promote both basic science and clinical interdisciplinary research into the biology of the 22q11.2 region, and the diagnosis, prognosis and management of related disorders.
A subsidiary goal will be to exploit the knowledge so gained for the benefit of populations of individuals with more common conditions.
Please note the 22q11.2 society is primarily an academic organization and not a forum providing discussion or individual advice concerning care.
22q Society
British Society for Immunologists
The BSI is one of the oldest, largest, and most active, Immunology societies in the world and is the largest in Europe. Our members are based all over the world, with the majority working in Britain.
The BSI's main objective is to promote and support excellence in research, scholarship and clinical practice in immunology for the benefit of human and animal health and welfare. The BSI seeks to help British Immunology accomplish the highest possible goals.
Visit the BSI
Congenital Cardiac Audit Database
View survival results for each paediatric and congenital heart surgical unit in England and Wales. This is an excellent site to visit if your child is due for cardiac surgery/catheter procedure.
NICOR (National Institute for Cardiovascular Outcomes Research) is part of the National Centre for Cardiovascular Preventions and Outcomes (NCCPO), which sits within the Institute of Cardiovascular Science (ICS) at University College London (UCL).
NICOR collects clinical information from UK hospitals into secure registries established by the cardiovascular specialist societies.
CCAD
Congenital Cardiac Nurses Association
The Congenital Cardiac Nurses Association is the only UK association dedicated to representing the voice of children's cardiac nurses throughout the UK and Southern Ireland.
The CCNA has approximately 250 members from around the UK and Southern Ireland, as well as a few members from around the globe. Members are predominantly nurses however over the last few years membership of the association has expanded to promote the engagement of other healthcare practitioners working in the speciality, such as adult nurses working in the adult congenital heart disease centres.
www.ccn-a.co.uk
Children's Hospital of Philadelphia (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.
http://www.chop.edu/service/22q-and-you-center
The Dalglish Family 22q Clinic - Toronto
This clinic is the first of its kind in the world to focus on adults with 22q11.2 Deletion Syndrome (22q11.2DS, serving individuals who are at least 17 years of age.
It also educates patients, families, trainees, and health care providers and performs world class research to improve the quality of life for individuals and families affected by the syndrome.
Dalglish Family Center
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
www.ich.ucl.ac.uk
SSBP
Society for the Study of Behavioural Phenotypes believes that progress in understanding the behavioural features associated with often complex genetic conditions is best served by providing a focus and point of contact for medical researchers and health care professionals working with those whose lives are affected by these conditions.
SSBP
South London and Maudsley
SLAM autism for adults - South London and Maudsley NHS Trust provides a National Resource for adults!!
Click on the link to find out what they have on offer and how you can get a referral to this very unique team.
SLaM
Totonto Sick Kids Hospital
They say:
Our mission is to provide and promote coordinated, interdisciplinary care and support to children with 22q11 deletion syndrome and their families.
Our vision is to be internationally and nationally recognized as a centre of excellence for clinical care, research and community education with respect to the 22q11deletion syndrome paediatric population.
See their factsheets!
Sick Kids Toronto