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Campaign

SOFT UK is not a campaigning charity. We exist to provide information and support to anyone affected by Trisomy 13, Trisomy 18 and related conditions. 

However, SOFT is a member of Together for Short Lives, the UK's leading charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. Together for Short Lives uses its voice to influence policy across the UK. Current priorities include the funding and commissioning of children's palliative care in the NHS.

SOFT is also a member of Genetic Alliance UK - the national charity of over 150 patient organisations supporting all those affected by genetic conditions. Their current policy campaigns include the commissioning of genetic testing and the NHS Constitution.

SOFT is also a partner organisation of Rare Disease UK - the national alliance for people with rare diseases and all who support them. Responses to relevant policy consultations can be found on their website.

The Future of Hospice Care

'The Future of Hospice Care: Implications for the children’s palliative care sector'captures the valuable learning, debate and discussion from the 2013 TfSL event. Download it here.

SPICe - neonatal palliative care in Scotland

A follow-up letter from SPICe following the Edwards debate in the Scottish parliament (Dec 2013) gives an excellent summary of the issues raised.