SOFT UK does not necessarily endorse the content of these these websites, please read the disclaimer at the end of every page. The following are links to other websites, charities and organisations that may be helpful if you are searching for information that is not on this website or you are an international visitor to the website.
Charities - for information and support
- Jeans for Genes
- Contact a Family
- Antenatal Results and Choices (ARC)
- Unique - The Rare Chromosome Disorder Support Group Unique is a source of information, networking and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. Unique is a UK-based charity but welcomes members worldwide.
- The Genetic Interest Alliance
- Together for Short Lives
- Downs Syndrome Assoc
- Compassionate Friends
- Tamba Twins and Multiple Births Assoc
- IPSEA Independent advice for parents on Education.
- Telling Stories - NHS Genetics website with a personal story of a family whose son had T18
- Much Loved - an online memorial website
- Kindred - support for families in Edinburgh, Lothians and Fife
- Emily's Star - a UK charity providing support for families in the Milton Keynes area.
Counselling and Therapy
You should make full enquiries into the expertise of the counsellor before attending the first counselling session. Whichever counsellor/psychotherapist you decide to see, either ask for proof of qualifications and insurance cover, or ask to see their registration details with their recognised professional body.
Equipment & Clothing
- Mandy Haberman Feeder
- Fledglings.org.uk - is a national charity that finds and sells products that improve the lives of disabled children and their families
- Something Precious is an online retailer of baby bereavement clothing (from 6 inches)
Family Stories of Trisomy
Go to Other Support Organisations and scroll down.
- Eildon Holiday Cottages - self-catering holiday accommodation with facilities that enable the whole family to holiday together. Disabled people can holiday alone (independent wheelchair user), with family, or with professional carers living in the cottage to provide the necessary support.
- National Down Syndrome Cytogenetic Register
- The Tracking Rare Incidence Syndromes - TRIS project seeks to increase awareness and knowledge for families and professionals touched by rare trisomy conditions and aims to facilitate improved decision making for optimal services and supports for children and their families.
- TRIS enrolment page
- TRIS email
- Chromosome 18 Registry and Research Society