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Family Day 17 May

Online bookings have now closed for the SOFT UK Family Day on 17th May. Please email SOFT to check on last minute availability of places. See you all soon!

SOFT Development Day

We would like to invite all our wonderful volunteers to a development session on Saturday 16 May at the Hilton Northampton. Help us shape the future of SOFT so we can better support families. We'll start about 3pm and have dinner around 7.30pm (family members welcome). Email Kirsty for more information and to reserve your hotel room (free of charge for volunteers and their families).

Prenatal Screening

From April 2015 women in England will be offered first trimester screening for Edwards' syndrome and Patau's syndrome (T18/T13). These conditions are already screened for in England in the second trimester. The change follows updated guidance for the NHS Fetal Anomaly Screening Programme; ensuring women continue to receive early, high quality information about their pregnancy. Changes will be reflected in the leaflet that parents receive - Screening Tests for You and Your Baby - and in guidance given to health professionals. For more info visit FASP

Contact a Family Cymru

2014 marks the 15th anniversary of Contact a Family Cymru. They are celebrating with family parties across Wales. The next one will be  on Sun 16th Nov in Llandudno. Join them for Frozen, lunch and cake galore! To find out about this and future family parties, see the local events listings on their website.

Family Companion 2014

Download a free copy of Together for Short Lives' A Family Companion. Recently released in its third edition, this is a hugely valuable resource for parents/carers and family members of children who have been diagnosed with a life-limiting or life-threatening condition. 

Bereavement in the Workplace

Cruse is running one-day Bereavement in the Workplace workshops in central London on Thurs 22 Jan and Tues 24 Feb. They are designed for anyone who wants to understand the issues, responsibilities and support surrounding bereavement in the workplace, and how to communicate with employees and colleagues suffering after loss. Recommended for HR personnel, line managers and small- to medium-sized business owners.

2015 Dates for your diary

The SOFT UK family day will be taking place on Sun 17 May in Northampton. The Scottish family day will be on Sat 19 Sept in Renfrew. We'll have more details soon.

SOFT sibling research project

The SOFT Trustees would like to develop the support that we offer to siblings in families affected by trisomy 13, trisomy 18 and related conditions. As part of that process, they are considering commissioning Erica Brown from Coventry University to undertake a small piece of research on the impact of bereavement on siblings in affected families. This work will cover both siblings born before and born after the death of their sister or brother. We would like to gauge interest among SOFT families about being interviewed for this research - please could you let us know if you would be interested in taking part.

MSc research - T18 information

Take part in a research project by Kelly Bluett on the information needs of parents who have received a diagnosis of T18. More info and links to the survey.

Children's Hospice Week 2014

This awareness-raising and fundraising week runs from 13 - 20 June. Did you take part in this week for your local children's hospice? Send us your news and we'll print it in the next SOFT newsletter.

Next events:

11 May Hospice Week 2015