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What we do

SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they were unfortunate enough to discover first-hand the lack of support and information available to families affected by Patau’s syndrome (Trisomy 13), Edwards’ syndrome (Trisomy 18) and related disorders.  Patau’s and Edwards’ Syndrome are Trisomy conditions – this means there are three copies of the relevant chromosome where there would normally be two. This usually occurs because of errors in the processes of cell division involved in conception and embryonic development. Having too much genetic material causes difficulties with every stage of development, from the early mitosis of a developing embryo to the growth and development of a living child. Patau’s and Edwards’ Syndromes cause a variety of developmental and health difficulties for affected individuals.  Both conditions are considered to be life-limiting, meaning they affect how long a baby can be expected to survive. They would be likely to require specialist medical intervention, particularly in the neo-natal period. Children affected by Patau’s and Edwards’ Syndromes can be expected to have significant health and developmental challenges. However, with medicine constantly advancing, more than 10% of children affected by such conditions can be expected to survive to their fifth birthday and beyond!

SOFT UK was consequently started to provide a much-needed support network for children and families affected by Patau’s and Edward’s Syndrome and related disorders. Since its humble origins almost 30 years ago, SOFT UK has grown into a much larger organisation run by families for families. Ninety percent of the volunteers and staff team have a link with Trisomy within their own families, helping to alleviate the potential isolation that a diagnosis can cause.

SOFT UK aims to provide the most up-to-date, relevant information on Patau’s and Edwards’ Syndromes, in a way that is accessible to both families and the professionals working with them.  Our information is evidence-based and prepared in collaboration with our professional advisers. It is always given to complement the advice of the clinicians who work with individual families.

SOFT UK’s primary mission is to ensure families can now access information and support when they need it, at whatever stage there are at in their journey.  We support families at every stage of their journey; through pregnancy, when caring, after a loss, expecting a new baby and beyond.  There are a range of ways to access our support; through our publications, our befriending service, our social media pages or our Family Events.
 
SOFT UK provides a wide range of Trisomy-related information, including a website packed with information and resources and a twice-yearly newsletter. We also signpost to other partner organisations for more specific information or supports.
 
SOFT UK Support Volunteers are all parents with experience of receiving a diagnosis of Patau’s Syndrome, Edwards’ Syndrome or a related condition.  They are specially trained to provide information and support to new members. We also run our SOFT FAMILIES Facebook group enabling SOFT UK members to connect with each other online.

SOFT UK also run free Family Days across the UK and have recently started to offer smaller regional events to improve accessibility. All SOFT UK’s services and events are provided free of charge to families. 
 
SOFT UK is committed to raising awareness about Trisomy conditions in our communities, to improve the experiences of our families.  We work in a range of multi-agency partnerships to raise the profile of Trisomy conditions, increase awareness of SOFT UK and its work and to provide training for professionals.  SOFT UK has professional advisers across a range of relevant specialisms, who contribute to all our work and provide a valuable network for professionals. SOFT UK regularly participates in research projects and consultations as a voice for families affected by Trisomy and provides information and training opportunities for Health Professionals working in related fields.  SOFT UK offers individualised information and support to professionals through our Enquiry Service. 

Above all, the mission of SOFT UK is to alleviate the isolation that comes with a Trisomy diagnosis. Run by families for families, there is always an empathic ear armed with the latest research and access to support.
 

Registered Charity: 1002918 (England and Wales) SC043341 (Scotland). Copyright © 2005 – 2017 SOFT UK. All rights reserved.