Families spending thousands of pounds filling in gaps of support A new survey shows that families with disabled children are spending huge amounts of their savings paying or fighting for support which they are entitled to for free. That’s according...
Spinal Muscular Atrophy Background Spinal Muscular Atrophy (SMA) is a rare, genetic neuromuscular condition causing progressive muscle wasting (atrophy) and weakness leading to loss of movement. Approximately one in every 10,000 babies worldwide are born with a Type...
NHS Covid Pass for international travel extended to children aged 12-15 in England Children aged 12-15 in England are now able to access an NHS Covid Pass letter for international travel if they have had both doses of the vaccine. This will allow...
Sotos syndrome Also known as: Cerebral Gigantism in Childhood Background In this rare syndrome, babies are generally significantly larger and heavier than average caused by excessive prenatal (before birth) and early post-natal...
What does the emergency Coronavirus bill mean for disabled children? The emergency Coronavirus Bill was published yesterday (19 March 2020) by the government.
It’s now or never: Take action on funding for disabled children’s services With just weeks to go until the Chancellor, Rishi Sunak MP, decides how much funding disabled children get in the upcoming government ‘spending review’, a new report from the Disabled Children’s...
Increase to child disability addition needed in Budget On Wednesday, Chancellor Jeremy Hunt will present his Budget Statement to parliament. With anticipated changes to Universal Credit and with charities calling for renewed cost of living support, Contact is...
Lack of available support forcing disabled children into home education Some families with disabled children in the UK are being forced into home schooling due to a lack of appropriate support at school, MPs on the Education Select Committee have...
Neuroblastoma Background Neuroblastoma is a cancer of specialised nerve cells, called neural crest cells. These cells are involved in the development of the nervous system and other tissues. Neuroblastoma tumours can...
Family takes Covid-19 recovery campaign to Downing Street It’s a really important time for us and our campaigning through the Disabled Children’s Partnership (DCP) as the Chancellor, Rishi Sunak MP, decides how much funding disabled children get in the...
Write to JCVI about vaccines for clinically vulnerable children We’ve prepared a template letter for parents to use. Our letter calls on the Joint Committee on Vaccination and Immunisation (JCVI) to recommend offering a Covid-19 vaccine as soon as...
Megalencephaly-capillary malformation syndrome Background The main characteristics of megalencephaly-capillary malformation (MCAP) syndrome are megalencephaly (large brain size) and a marbled appearance of the skin (called cutis marmorata), which is present at birth and...
Erb’s Palsy Also known as: Erb–Duchenne Palsy Background Erb’s palsy describes a paralysis of the nerves supplying the arm, mainly occurring after trauma during birth. The incidence of Erb’s palsy is now...
Williams syndrome Also known as: Infantile Hypercalcaemia; Williams-Beuren syndrome Background Williams syndrome is a rare congenital (present at birth) condition that is caused by missing genetic material from chromosome 7. Individuals with...
School transport for disabled children in England: top 5 questions answered The new school term is just around the corner, yet many parent carers are still facing major hurdles to secure transport arrangements for their disabled child. School transport is a...
How to ensure tax credits payments for your 16-19 year old don’t stop Do you have a 16-19 year old staying in school or college after the summer holidays? Remember to let the Tax Credit Office know by 31 August or you could...
Cycling supremo rides across Britain in 9 days to raise money for families with disabled children Dad-of-three Agustin Crespo is cycling 970 miles across Britain in just 9 days to raise money for Contact. Agustin, from Wimbledon, started his epic journey on 4th September on the...