Being nurses couldn’t prepare us for being told our son Elijah had myotubular myopathy and was expected to live only a few weeks. We tried for five years for a baby before Elijah was conceived but when he was born...

A new edition of Basic Symptom Control in Paediatric Palliative Care – the Rainbows Children’s Hospice Guidelines is launched today. The Basic Symptom Control Manual (9.5 edition) is a unique resource, bringing together all symptom management for babies, children and young people and providing...

Samantha Cameron last night (1 March) hosted a reception on our behalf at No. 10 Downing Street. The event helped to raise awareness of the needs of the UK’s 49,000 children and young people living with a life-shortening condition. Mum,...

In Northern Ireland alone, there are currently estimated to be 1,300 children and young people living with life-shortening conditions. Many of these children have extremely complex and unpredictable conditions, requiring round the clock care, seven days a week. Northern Ireland...

Short breaks for families caring for a child who may not reach adulthood mean more than just a holiday – they provide vital respite and help families cope with the pressure of providing round the clock care for their children....

Together for Short Lives today launches the ninth edition of Basic Symptom Control in Paediatric Palliative Care – the Rainbows Children’s Hospice Guidelines. The Basic Symptom Control Manual is a completely unique resource, bringing together all symptom management for babies, children and young...