Other Support & Information
Cardiovascular Care Partnership-UK (CCP-UK)
This is the patient arm of the British Cardiovascular Society.
CCCP (UK) was set up in 2003 in response to a request from the British Cardiovascular Society, to draw together users that could represent patients and carers within the process for cardiac service improvement.
http://www.bcs.com/pages/page_box_contents.asp?navcatID=65&PageID=325
Children's Heart Federation
CHF is the national umbrella organisation for all charities for children with heart defects, both congenital and acquired. Great information and diagrams.
CLEFT - Bridging the gap
Aims to improve the care of people with cleft lip and palate in the UK and overseas. It supports research in to the causes and treatments of cleft lip and palate and related conditions, including 22q11.2 deletion syndrome, and to support cleft teams in developing countries where little maybe known about 22q11.
Cleft Lip and Palate Association
UK-wide voluntary organisation specifically helping those with, and affected by, cleft lip and palate.
Contact a Family
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.
Children’s Heartbeat Trust - Northern Ireland Children’s Heart Charity
Supporting families of children and young people with heart disease in Northern Ireland.
Family Fund
Family Fund is the UK’s largest charity providing grants for families raising disabled or seriously ill children and young people
HeartLine Association
Online chat forum and support for children and families with heart conditions
ITP Support
Idiopathic Thrombocytopaenic Purpura is a blood disorder in which the body's immune system destroys palatelets in the blood. ITP Support Association provides patient support, advice on referrals and a telephone network of other sufferers or parents.
Parathyroid UK
National voluntary organisation working to make life better for all those with hypoparathyroidism and other rare parathyroid conditions.
Sibs
Sibs is the only UK charity representing the needs of siblings of disabled people. Siblings have a lifelong need for information, they often experience social and emotional isolation, and have to cope with difficult situations.
Speech@Home
SWAN UK
SWAN UK (Syndromes Without a Name) is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditons
Tiny Tickers
Tiny Tickers is working to improve early detection, so that more heart babies receive the care they need, avoid unnecessary illness and have a chance of a better start in life. Early detection includes improving screening before birth (prenatal CHD screening) and following a Prenatal CHD Pathway, testing for undetected CHD after a baby is born (e.g. Pulse Oximetry) and creating awareness of the signs of undetected heart conditions at home and in the community (Think HEART).
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!
