SOFT UK provides support for families of children with T13, T18 and related disorders.
- We will send you a free copy of Your Baby or the USA publication "Caring for a Child" if your child is over 12 months of age.
- We are often able to link you to other members who have children with a similar condition, or experience of a specific issue
- We hold annual events in England, Scotland and Northern Ireland (bi-annual), where you can meet other families
- We may be able to notify you about any grant funding we are made aware of
- We have access to a wide range of disability related resources and professional advisers and can provide support on specific issues
- Sometimes SOFT UK is contacted by doctors or other professionals about research and where we are satisfied that the research proposal is satisfactory we may contact carers to ask if they wish to take part.
Please take a look at the links on the left for many inspiring stories about SOFT UK Children.
InsuranceWith, supported by Genetic Alliance UK, have launched the Who Cares Award to give carers the opportunity to be recognised for all of their hard work. The awards will be based on nominations from the public or through dedicated charities of those people who support others, dedicate their lives or put their lives on hold to care for others. Candidates can be young or old, a professional nurse or a relative. You can nominate someone you know here.
The Northern Ireland Family Day will take place on Saturday 10th August at the Charelmount Arms Hotel in Armagh.
Join other SOFT UK families to chat, share experiences and bring the children along for the fun activities! There will also be some remembrance time for those families who wish to remember a loved one.
As always everyone is very welcome!
Refreshments will be provided.
For more information and booking, please contact email@example.com
Joanne Fullerton, a Trainee Clinical Psychologist with Bangor University is completing a study investigating the experiences of siblings of children with life limiting conditions. She is looking for volunteers to take part. The aim of the study is to better understand the experiences of this group of siblings. If you are the parent of a sibling aged between 3 and 16 years, and you and your sibling child wish to take part, simply email her on firstname.lastname@example.org or contact her via telephone on 07957 620608
Our colleagues at SOFT USA have just launched their new website. It has a fantastic new look at contains lots of resources for families and also professionals. There is a comprehensive research section, providing all the details of the latest research on Trisomies and related issues. There are some beautiful family stories and videos and links to all their support materials. The site also has a foreign language translation function for those who first language is not english.
SOFT US have worked in partnership with us for many years and have kindly given us permission to feature their content on our own site, making sure that all families have access to the information that they need.
So head on over and have a look at www.trisomy.org
The CEN have published their results on their work improving support for families in Scotland of children who are tube fed. The full report is available here. http://www.cen.scot.nhs.uk/files/Emotional_Impact_Evaluation_Jan13.pdf