Links and resources

Listed below are links to the websites of other organisations which offer support and information around issues such as antenatal screening and testing, specific conditions and syndromes, and loss and bereavement. These links are not intended to replace the help ARC offers. Please don’t hesitate to contact us with any questions or to talk through any of these issues.

ARC Helpline: 0207 631 0285 (10am to 5.30pm, Monday to Friday)

Email: info@arc-uk.org

NB: The content of these websites do not necessarily reflect the opinions of ARC and inclusion on this page does not constitute a recommendation or endorsement by ARC. ARC recommends that you read the privacy policy of each website you visit. ARC's Privacy Policy does not apply to third party websites.

Antenatal screening and testing

ANSWER (Antenatal Screening Web Resource) www.antenataltesting.info
Information about some of the conditions that might be detected by antenatal tests, including personal testimonies from people affected by them

Dipex http://www.healthtalkonline.org/Pregnancy_children/
Personal experiences of antenatal screening, including decision-making after a prenatal diagnosis

Fetal Anomaly Screening Programme (FASP)http://www.fetalanomaly.screening.nhs.uk/ Online interactive map showing where fetal anomaly screening is available around England. Downloadable leaflets on Down’s syndrome screening in 17 languages

Fetal Medicine Foundation www.fetalmedicine.com
Promotes research and training in fetal medicine. The website has information about screening and a list of centres which offer private nuchal scans/combined screening tests

Wolfson Institute www.wolfson.qmul.ac.uk
Provides private integrated, combined and quadruple screening tests and downloadable leaflets about these tests

Conditions

ASBAH (Association for Spina Bifida and Hydrocephalus) www.asbah.org
Information and medical advice about spina bifida, hydrocephalus and anencephaly

Newlife Foundation (formerly Birth Defects Foundation) www.newlifecharity.co.uk Equipment and nurse-led support services for disabled and terminally ill children

Cherubs UK www.uk-cherubs.org.uk
Information and support for families affected by congenital diaphragmatic hernia

CLAPA (Cleft Lip and Palate Association) www.clapa.com
Information and support for families affected by cleft lip and/or palate, including parents who have received a prenatal diagnosis

Contact a Family www.cafamily.org.uk
Information, support and advice for families with a child with any disability or special need, including expectant parents with a prenatal diagnosis. Information about a wide range of conditions, including rare conditions

Cystic Fibrosis Trust www.cftrust.org.uk
Information, advice and support around any aspect of cystic fibrosis

Children’s Heart Federation www.childrens-heart-fed.org.uk
Information and support for families with a child diagnosed with congenital heart disease. Represents most of the organisations linked to children with heart conditions in the UK

CLIMB (National Information and Advice Centre for Metabolic Disease) www.climb.org.uk
Information and support on all metabolic diseases to children, adults, families, carers and professionals

Diabetes UK www.diabetes.org.uk
Information about pregnancy and diabetes, including gestational diabetes mellitus

Down’s Heart Group www.dhg.org.uk
Support and information relating to heart conditions associated with Down’s syndrome

Down’s Syndrome Association www.downs-syndrome.org.uk
Information and support for people with Down’s syndrome, their families and carers, and the professionals who work with them

Fragile X Society www.fragilex.org.uk
Support, information and friendship to families whose children and relatives have fragile X syndrome

GEEPS www.geeps.co.uk
An international network of families and friends of children born with abdominal abnormalities, including exomphalos and gastrochisis

Genetic Alliance UK www.geneticalliance.org.uk
Alliance of organisations which support children, families and individuals affected by genetic disorders. Information about genetic disorders and a directory of genetic centres and services

Group B Strep Support www.gbss.org.uk
Information and support to pregnant women and families affected by GBS,and information about how most group B Strep infections in newborn babies can be prevented

Klinefelter’s Syndrome Association UK www.ksa-uk.co.uk
Information and support around Klinefelter’s syndrome

Little Hearts Matter www.lhm.org.uk
Information and support for families affected by diagnosis of a single ventricle heart condition, such as hypoplastic left heart syndrome, tricuspid atresia, double inlet ventricle or pulmonary atresia

REACH www.reach.org.uk
Support and advice for children with hand or arm deficiencies, and their parents

Restricted Growth Association www.restrictedgrowth.co.uk
Information and support for people with restricted growth conditions and their families

Sickle Cell Society www.sicklecellsociety.org
Information, advice and support around sickle cell disorders

SOFT UK www.soft.org.uk
Support for families affected by Patau's Syndrome (trisomy 13), Edward's Syndrome (trisomy 18), partial trisomy, mosaicism, rings, translocation, deletion, and related disorders

STEPS www.steps-charity.org.uk
Support for those affected by a lower limb condition such as clubfoot or a hip condition

Terrence Higgins Trust (THT) www.tht.org.uk
Information about HIV and pregnancy

UK Thalassaemia Society www.ukts.org
Information and support around thalassaemia

Turner Syndrome Support Society www.tss.org.uk
Information and support for girls and women with Turner Syndrome

UNIQUE www.rarechromo.org
Information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them

Pregnancy, childbirth and general

Association for Postnatal Illness (APNI) www.apni.org
Information and support around postnatal depression

BPAS www.bpas.org.uk
To arrange a private termination

British Association for Adoption and Fostering (BAAF) www.baaf.org.uk/info/firstq/pregnant.shtml
Information for women who are pregnant and thinking about adoption

Brook www.brook.org.uk
Free and confidential sexual health advice for under 25s, including information on pregnancy and abortion

FPA (Family Planning Association) www.fpa.org.uk
Information and support around unplanned pregnancy

HFEA (Human Fertilisation and Embryology Authority) www.hfea.gov.uk
Information about infertility, treatment and clinics, including a free downloadable guide to infertility

Infertility Network www.infertilitynetworkuk.com
Information and support to anyone affected by fertility problems

Marie Stopes International www.mariestopes.org.uk
To arrange a private termination

Multiple Birth Foundation (MBF) www.multiplebirths.org.uk
Advice, information and support to multiple birth families (twins, triplets and more) and professionals working in the field

NCT (National Childbirth Trust) www.nct.org.uk
General information about pregnancy and birth, including antenatal classes

TAMBA (Twins and Multiple Births Association) www.tamba.org.uk
Information and mutual support networks for families of twins, triplets and more

Women’s Health Concern www.womens-health-concern.org
Information and advice from nurse counsellors and medical advisers on a range of gynaecological, sexual health and other medical issues affecting women

Working Families www.workingfamilies.org.uk
Information on maternity rights, fathers’ rights and other issues

Pregnancy loss, stillbirth and neonatal death

Babyloss www.babyloss.com
Information and support online for anyone affected by the death of a baby during pregnancy, at birth, or shortly afterwards. Includes details of annual babyloss awareness week

Baby Mailing Preference Service (BMPS) www.mpsonline.org.uk/bmpsr Baby MPS is a free service which allows you to register not to receive baby related mailings

Child Bereavement Charity www.childbereavement.org.uk
Support and information for bereaved children and families. Support, training and networking for professionals who work with bereaved families

Ectopic Pregnancy Trust www.ectopic.org
Information and support around ectopic pregnancy

Miscarriage Association www.miscarriageassociation.org.uk
Support and information around miscarriage, ectopic and molar pregnancy

SANDS www.uk-sands.org
Support around stillbirth and neonatal death

TAMBA Bereavement Support Group www.tamba-bsg.org.uk
Support for parents who have lost a baby or babies during a multiple pregnancy or at any stage after birth

Counselling and general bereavement support

BACP (British Association for Counselling & Psychotherapy) www.bacp.co.uk
Information about counselling and details of qualified and accredited practitioners and therapists by geographical area

CRUSE Bereavement Care www.crusebereavementcare.org.uk
National charity specialising in bereavement. Offers information and local support

Relate www.relate.org.uk
Relationship counselling and other relationship support services