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Useful links

Listed below are links to the websites of other organisations offering support and information around issues such as antenatal screening, specific conditions and syndromes, and loss and bereavement. These links are not intended to replace medical advice.

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

  • UK National Screening Committee (UKNSC): The UKNSC is the expert body that advises government on population screening and oversees all antenatal screening tests.
  • Fetal Medicine Foundation: Promotes research and training in fetal medicine. Provides private screening and diagnostic tests at its London clinic.

Conditions

  • CDH 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.
  • Metabolic Support UK (Formally known as climb): Information and support on all metabolic diseases for children, adults, families, carers and professionals.
  • Contact: 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, new and expectant parents and the professionals who work with them.
  • Down’s Syndrome Scotland: Scotland based, providing Information and support for people with Down’s syndrome, their families, carers and professionals who work with them; information and support for new and expectant parents on living with the condition.
  • Fragile X Society: Support, information and friendship for families of those who have Fragile X syndrome.
  • Genetic Alliance UK: An alliance of organisations which support children, families and individuals affected by genetic conditions. 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.
  • Noonan Syndrome Association: Information and support around Noonan’s syndrome.
  • 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: supports and represents people affected by sickle cell disease to improve their overall quality of life.
  • SOFT UK: Support for families affected by Patau’s syndrome (Trisomy 13), Edwards’ 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 talipes or a hip condition.
  • Terrence Higgins Trust (THT): Information and advice about HIV and pregnancy.
  • The Arthrogryposis Group (TAG): Information and support for people living with AMC.
  • Tiny Tickers: works to improve the early detection and diagnosis of heart defects in babies.
  • 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 condition and for the professionals who work with them.

Pregnancy, childbirth and general information

  • General information regarding antenatal classes from NHS Choices
  • 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 (British Pregnancy Advisory Service): Information and advice about termination. Bpas also provides a termination service.
  • Brook: Information and advice about pregnancy, including pregnancy testing, having a baby, abortion and adoption.
  • BUMPS (Best Use of Medicines in Pregnancy): Provides evidence-based and accurate information about use of medicines in pregnancy,
  • HFEA (Human Fertilisation and Embryology Authority): Information about infertility, treatment and clinics, including a free downloadable guide to infertility.
  • Fertility Network UK (formerly Infertility Network): Information and support for anyone affected by fertility problems.
  • MSI Reproductive Choices: Information and advice about termination. MSI can also arrange terminations through the NHS or as an independent provider.
  • NCT (National Childbirth Trust): General information about pregnancy and birth, including antenatal classes.
  • NUPAS: NUPAS have 17 clinics across the UK, offering dedicated help and support to both NHS and private clients requiring abortion treatments, family planning and sexual health advice and care.
  • Twins Trust: 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

  • Baby Mailing Preference Service (BMPS): A free service which allows you to register not to receive baby related mailings.
  • Child Bereavement UK: 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.
  • Ending a Wanted Pregnancy (previously known as A Heartbreaking Choice): Based in America, this support and information site includes public and private forums for parents who have made the decision to end a pregnancy following a prenatal diagnosis.
  • Exhale: American organisation offering non-judgmental post-abortion support.
  • Footprints: Provides support to parents and families who experience the death of one or more of their twins or triplets before, during or after birth.
  • Legacy of Leo: A collection of baby loss stories written by LGBT families.
  • Miscarriage Association: Support and information around miscarriage, ectopic and molar pregnancy.
  • Muslim Bereavement Support Service: offers free, confidential support to those seeking faith-specific bereavement support.
  • Pregnancy Sickness Support: Provides information and support to women affected by hyperemesis gravidarum, including those who have experienced pregnancy loss.
  • SANDS: Support around stillbirth and neonatal death.
  • Simba: Providing memory boxes to families in Scotland.
  • Time to Tallk TFMR Podcast: A podcast hosted by two women who have experienced TFMR, featuring a different guest every episode.
  • Twins Trust 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.

Counselling and general bereavement support

  • BACP (British Association for Counselling & Psychotherapy): Information about counselling, and details of qualified and accredited practitioners and therapists by geographical area.
  • CRUSE Bereavement Care: National charity specialising in bereavement. Offers information and local support.
  • Relate: The largest provider of relationship support in England and Wales.
  • Relate NI: Northern Ireland’s largest provider of relationship support.
  • Relationships Scotland: Scotland’s largest provider of relationship counselling.
  • Tavistock Relationships: Internationally renowned relationship therapy training and research centre, which also provides clinical services to individuals and couples, face to face (in London) and online.
  • UKCP (UK Council for Psychotherapy): Information about psychotherapy and details of registered therapists across the UK.