Antenatal Results and Choices (ARC)
Website: www.arc-uk.org
Email: info@arc-uk.org Helpline: 0845 077 2290
Antenatal Results and Choices (ARC) provides information and support to parents before, during and after antenatal screening and diagnostic tests, especially those parents making difficult decisions about testing, or about continuing or ending a pregnancy after a diagnosis. ARC offers ongoing support whatever decisions are made.
CLAPA – Cleft Lip and Palate Association
Website: www.clapa.com
Email: info@clapa.com Helpline: 0207 833 4883
CLAPA is the only UK-wide voluntary organisation specifically helping those with, and affected by, cleft lip and palate. Branches are run by people who have benefited from the organisation, often working in partnership with local health professionals. CLAPA has a team of trained Parent Contacts who have personal experience of having a child with a cleft lip and are available to talk to parents after diagnosis.
Down Syndrome Association
Website: www.downs-syndrome.org.uk
Email: info@downs-syndrome.org.uk
Helpline: 0333 1212 300
The Down Syndrome Association is a UK based organisation focussed on all aspects of living successfully with Down’s syndrome. They provide information and run a helpline; provide information about all aspects of living with Down’s syndrome including specialist advisers on benefits, education, health and social care; advise new parents or anyone with questions; promote and facilitate information exchange between members through various groups; advise on employment for people with Down’s syndrome. They also give key messages to the media, public and professionals; influence policy making; responsible for external publications and provide training throughout the UK for members, professionals and carers.
Ffions Gift
Facebook: www.facebook.com/ffionsgift18
Email: ffionsgift@outlook.com
Ffions Gift is a South Wales based registered charity (Charity Number 1167760), that has been created by Ffion’s Mummy, family and friends, in her memory. Ffion was born in the arms of an angel on 1st April 2015. She had been diagnosed with the rare life-limiting genetic condition, Edward Syndrome (Trisomy 18).
They aim to preserve and protect the health of pregnant women who have previously suffered a loss to Edward Syndrome by raising public awareness of Edwards Syndrome (Trisomy 18), campaigning for NHS screening for Edward Syndrome and raising funds to subsidise £100 towards non-invasive prenatal testing (NIPT) for women who have had a previous baby with Edward Syndrome as it is currently only available as a private test in Wales.
Stillbirths and Neonatal Deaths Charity (SANDS)
Website: www.uk-sands.org
Email: helpline@uk-sands.org Helpline: 020 7436 5881
The death of a baby before, during or shortly after birth is a devastating experience with lifelong consequences for the whole family. Sadly, each year thousands of families face such heartache, with over 100 babies dying every week. Although the UK’s stillbirth rate has fallen slightly in recent years, it remains unacceptably high.
SANDS work to support bereaved families and improve the care they receive as well as fund vital research to prevent more families suffering the loss of their precious baby. They support anyone who has been affected by the death of a baby before, during or shortly after birth. They offer emotional support and information for parents, grandparents, siblings, children, families and friends, health professionals and others.
