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In 2013 in the UK, one in every 137 babies was either stillborn or died in the first 4 weeks of life

Here in N. Ireland, over 3 babies a week are stillborn or die in the first 4 weeks of life.

Medical Organisations

 

This is a list of organisations which provide specialist information about specific medical conditions.

For some medical conditions there are specialist organisations that offer detailed medical information. It is not possible for us to cover all medical causes of a baby's death, as sadly there are simply too many.
(Please note Sands cannot guarantee the accuracy on the information on these sites)

Action on Pre-Eclampsia (APEC) - Aims to ease and prevent suffering from pre-eclampsia and improve care and understanding of the condition. www.apec.org.uk

Association for Children with Heart Disorders - Helps hospitals with funding for vital pieces of equipment and give support and understanding to parents and families. www.heartchild.info

Anencephaly Support - The group aims to provide emotional support to families, to give information on the condition and provide an opportunity to talk to someone who has also lost a baby with anecephaly. Tel: 01684 573974

ASBAH (Association for Spina Bifida and Hydrocephalus) - Has information and support for parents of children with spina bifida and/or hydrocephalus. Bereaved can speak to medical advisors. www.asbah.org

British Heart Foundation - Funds research into the causes, prevention, diagnosis and treatment of heart disease. It has a wide range of information available. www.bhf.org.uk

British Kidney Patient Association - Counselling and advice for patients with kidney problems. Tel: 01420 472021/2 British Liver Trust - Can give medical information about all forms of liver problems. (see also OC Support). www.britishlivertrust.org.uk

British Thyroid Foundation - Offers support for affected adults, and support for families of children with thyroid disorders. www.btf-thyroid.org

Children's Liver Disease Foundation - Pioneering research, effective education and giving professional, caring emotional support to families and young people with a liver disease. www.childliverdisease.org

CLIMB (Children Living with Metabolic Disorders) - Information and support about metabolic diseases. www.climb.org.uk

Congenital CMV Association - Self Help Group offering contact between families and campaigning for further research. It publishes a newsletter and has information available. Tel: 01743 850055

Contact a Family - UK-wide charity providing support, advice and information for families with disabled children. Has an online directory of support organisations for many conditions. www.cafamily.org.uk

Diabetes UK - Help and support for people with diabetes. Information for parents. www.diabetes.org.uk

Downs Syndrome Association - Offers information, advice, counselling and support for parents of children with Down's syndrome. www.downs-syndrome.org.uk

DPPi (Disability Pregnancy and Parenthood international) - Support for parents with disabilities and long term health problems. www.dppi.org.uk

GBSS (Group B Strep Support) - Offers support and information by telephone and letter and aims to raise awareness of Group B Streptococcus infection. Responds to enquiries from the families of affected babies and women known to carry or have carried the bacteria. www.gbss.org

Heartline Association - Offers support and information on aspects of congenital heart disease in babies and children and parent contact through a nationwide network of groups. www.heartline.org.uk

Hughes Syndrome Foundation - Aims to provide information about Hughes syndrome (antiphospholipid syndrome: APS) and to help with research into this condition. www.hughes-syndrome.org

Lupus UK - Offers a wide range of information about Lupus (SLE) and information about Hughes syndrome. www.lupusuk.com

Meningitis Research Foundation - Offers information, befriending and support for people affected by meningitis and septicaemia. including support for those who have been bereaved. www.meningitis.org

National Meningitis Trust - Offers support for people affected by meningitis/ meningococcal disease. www.meningitis-trust.org

Obstetric Cholestasis Support - Provides support to mothers who have the condition and information to those who think they may have had the condition but need to be diagnosed. www.ocsupport.org.uk

Potter's Syndrome Support Group - Support for parents bereaved by this syndrome (absence of kidneys); fact sheet. Tel: 01938 553755

SENSE - Fact sheets about complications caused by rubella in pregnancy. www.sense.org.uk

Sickle Cell Society - Information, Counselling and Caring for those with Sickle Cell Disorders and their families. www.sicklecellsociety.org

Soft UK - Support Organisation For Trisomy 13/18 and related disorders. Supports families including those who baby has died. www.soft.org.uk

UK Thalassaemia Society - Offers advice and support for affected families together with counselling for carriers, affected individuals and families. www.ukts.org

UNIQUE - rare chromosome Disorder Group - A source of information, mutual support and self-help to families of children with any rare chromosome disorders. www.rarechromo.org

Vasa Previa Foundation - Information about Vasa Previa : symptoms , signs and treatment. www.vasaprevia.com