Links and resources

Listed below are links to the websites of other organisations offering 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: 0845 077 2290 (10am to 5.30pm, Monday to Friday)

Email: info@arc-uk.org

NB: The content of these websites does 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

Healthtalk Online

Personal experiences of antenatal screening, including decision-making after a prenatal diagnosis.

Fetal Anomaly Screening Programme (FASP)

Online interactive map showing where fetal anomaly screening is available around England. Downloadable leaflets on Down’s syndrome screening are available in 17 languages. FASP has also developed a resource for parents to find out more about screening for Down's syndrome and fetal anomalies during pregnancy. It can be found here.

Fetal Medicine Foundation

Promotes research and training in fetal medicine. Provides private screening and diagnostic tests at its London clinic.

Wolfson Institute

Provides private integrated, combined and quadruple screening tests and downloadable leaflets about these tests.

Conditions

Cherubs UK

Information and support for families affected by congenital diaphragmatic hernia.

Children’s Heart Federation

Information and support for families with a child diagnosed with congenital heart disease. Represents most of the organisations for children with heart conditions in the UK.

CLAPA (Cleft Lip and Palate Association)

Information and support for families affected by cleft lip and/or palate, including parents who have received a prenatal diagnosis.

CLIMB (National Information and Advice Centre for Metabolic Disease)

Information and support on all metabolic diseases for children, adults, families, carers and professionals.

Contact a Family

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

Information, advice and support around all aspects of cystic fibrosis.

Diabetes UK

Information about pregnancy and diabetes, including gestational diabetes mellitus.

Down’s Heart Group

Support and information relating to heart conditions associated with Down’s syndrome.

Down’s Syndrome Association

Information and support for people with Down’s syndrome, their families and carers, and the professionals who work with them.

Fragile X Society

Support, information and friendship for families of those who have Fragile X syndrome.

GEEPS

An international network of families and friends of children born with abdominal abnormalities, including exomphalos and gastrochisis.

Genetic Alliance UK

An 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

Information and support for 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

Information and support around Klinefelter’s syndrome.

Little Hearts Matter

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.

Newlife Foundation (formerly Birth Defects Foundation)

Equipment and nurse-led support services for disabled and terminally ill children.

REACH

Support and advice for children with hand or arm deficiencies, and their parents.

Restricted Growth Association

Information and support for people with restricted growth conditions and their families.

SHINE (Formerly ASBAH - Association for Spina Bifida and Hydrocephalus)

Information and medical advice about spina bifida, hydrocephalus and anencephaly.

Sickle Cell Society

Information, advice and support around sickle cell disorders.

SOFT UK

Support for families affected by Patau's syndrome (trisomy 13), Edward's syndrome (trisomy 18), partial trisomy, mosaicism, ring chromosomes, translocation, deletion, and related disorders.

STEPS

Support for those affected by a lower limb condition such as clubfoot or a hip condition.

Terrence Higgins Trust (THT)

Information and advice about HIV and pregnancy.

Turner Syndrome Support Society

Information and support for girls and women with Turner Syndrome.

UK Thalassaemia Society

Information and support around thalassaemia.

UNIQUE

Information and support for families and individuals affected by any rare chromosome disorder and for the professionals who work with them.

Unplanned Pregnancy Counselling Service

Offers non-directive and non-judgemental counselling and information services to women in Northern Ireland facing a termination under any circumstances.

Pregnancy, childbirth and general information

Association for Postnatal Illness (APNI)

Information and support around postnatal depression.

BLISS

Information for parents of babies born too soon, too small or too sick to cope on their own.

BPAS

To arrange a private termination.

British Association for Adoption and Fostering (BAAF)

Information for women who are pregnant and thinking about adoption.

Brook

Free and confidential sexual health advice for under 25s, including information on pregnancy and abortion.

FPA (Family Planning Association)

Information and support around unplanned pregnancy.

HFEA (Human Fertilisation and Embryology Authority)

Information about infertility, treatment and clinics, including a free downloadable guide to infertility.

Infertility Network

Information and support for anyone affected by fertility problems.

Marie Stopes International

Information and advice about abortion. MSI can also arrange NHS and private abortions.

Multiple Birth Foundation (MBF)

Advice, information and support for multiple birth families (twins, triplets and more) and professionals working in the field.

NCT (National Childbirth Trust)

General information about pregnancy and birth, including antenatal classes.

TAMBA (Twins and Multiple Births Association)

Information and mutual support networks for parents and families of twins, triplets and more.

Women’s Health Concern

Information and advice from specialist nurses and medical advisers on a range of gynaecological, sexual health and other medical issues affecting women.

Working Families

Information on maternity rights, fathers’ rights and other issues affecting families.

Pregnancy loss, stillbirth and neonatal death

Babyloss

Information and support online for anyone affected by the death of a baby during pregnancy, at birth, or shortly afterwards. Visit the babyloss awareness site for details of the annual baby loss awareness week.

Baby Mailing Preference Service (BMPS)

A free service which allows you to register not to receive baby related mailings.

Child Bereavement Charity

Support and information for bereaved children and families who have lost children. Support, training and networking for professionals who work with bereaved families.

Ectopic Pregnancy Trust

Information and support around ectopic pregnancy.

Miscarriage Association

Support and information around miscarriage, ectopic and molar pregnancy.

SANDS

Support around stillbirth and neonatal death.

Something Precious

The only UK baby funeral specialists, this site offers tiny baby bereavement clothing. Clothing can also be found on their other website here.

TAMBA Bereavement Support Group

Support for parents who have lost a baby or babies during a multiple pregnancy or at any stage after birth.

Together for Short Lives

Formerly ACT and Children's Hospices UK. Support and information for families with babies and children with life-limiting and life-threatening conditions. Developed The Neonatal Care Pathway for Babies with Palliative Care Needs which is available to download from their website.

Also in this section

Links and resources

Antenatal screening and testing

Conditions

Pregnancy, childbirth and general information

Pregnancy loss, stillbirth and neonatal death

Counselling and general bereavement support