Soft.org Facebook Soft.org Twitter Soft.org Instagram
Soft.org Facebook Soft.org Twitter Soft.org Instagram

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.  (See our section on About Trisomy for further info)


Mission Statement

SOFT UK was consequently started to provide a much-needed support network for children and families affected by Pataus' and Edwards' 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 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.
 

Information Provided

 
  • SOFT UK aims to provide information that is evidence-based and prepared in collaboration with our professional advisers. It is always given to compliment 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 they 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.  Take a look at the 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 quarterly-yearly newsletter that includes resources, family stories the latest updates to research and much more
  • SOFT UK Support Volunteers are all parents with experience of receiving a diagnosis of Pataus' 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.  


 

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