Prematurity and Sick Newborn Background Pre-term (also known as premature) infants are those which are born before 37 weeks’ gestation (time within the womb). With modern care during pregnancy and with neonatal (the period...
Addison’s disease Addison’s disease, also known as primary adrenal insufficiency or hypoadrenalism, is a rare condition where the adrenal glands cease to function. Addison’s disease, first described in 1849 by Dr T...
Support Maureen’s call for Covid-19 recovery funding Nearly three quarters of disabled children have seen their overall development regress during the pandemic, according to research from the Disabled Children’s Partnership. One of those children is Calvin, 15,...
Cardiofaciocutaneous syndrome Also known as: CFC syndrome Background Cardiofaciocutaneous syndrome (CFC) is a rare congenital (present at birth) condition which consists of characteristic facial features and learning disability. About 200 cases of...
Your top questions about post 16 education in England answered Thanks to everyone who attended our recent Facebook Q&A session about post-16 education in England for your disabled child. There’s certainly a lot to think about when your disabled child...
Spotlight on SEND in Parliament this week This applies to England only. This week, there are three parliamentary debates on special educational needs and disabilities (SEND) in England. We have sent a briefing to all MPs, outlining...
MPs warn nearly a million teens missing out on savings in Child Trust Funds A new report from the Public Accounts Committee (PAC) – a group of cross-party MPs – has found that nearly a million young people are missing out on savings in...
Watch our new animation about winter viruses in babies and toddlers The number of babies and toddlers developing serious chest infections and breathing problems caused by a common winter virus called RSV (Respiratory syncytial virus) is on the rise. Watch our...
Acute Disseminated Encephalomyelitis Background Acute disseminated encephalomyelitis (ADEM) is an inflammatory disorder affecting the brain (enceph-) and/or spinal cord (myelitis). It is a rare condition mostly affecting children and is usually monophasic meaning...
Pompe disease Also known as: Acid Maltase Deficiency; Alpha 1,4-glucosidase Deficiency; Glycogen Storage disease Type II Background Pompe disease is a rare inherited metabolic disorder caused by deficiency of an enzyme that...
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...
Your top questions answered in our social care Q&A This story applies to England only. Last week, parent carers attended our Facebook Q&A on Social Care, Rights & Processes to get expert, live advice from our parent advisers. And...
Ectodermal Dysplasia Background Ectodermal dysplasia (ED) is not a single disorder, but a group of closely-related conditions of which more than 160 different syndromes have been identified. They are genetic conditions affecting...
Vitiligo If your child is affected by a medical condition or disability we can help. Call our freephone helpline on 0808 808 3555 to get information, support and advice. You can...
OHDO syndrome − Say/Barber/Biesecker Type Also known as: Ohdo Blepharophimosis Ohdo and his colleagues from Japan first described two sisters and a cousin with learning disabilities (see entry Learning Disability) associated with congenital heart disease,...
Silver-Russell syndrome Also known as: Asymmetry Dwarfism; Russell-Silver syndrome; Silver’s syndrome Background Silver-Russell syndrome is a growth disorder characterised by slow growth before and after birth. Babies with Silver-Russell syndrome have a...
Celebrate our Weekly Lottery’s 3rd birthday with a free draw! This month marks three years since we launched the Contact Weekly Lottery, our popular game giving you the chance to win cash prizes every week – all while making a...
Free workshops for London parent carers next week We’ve got some free online workshops for London parents caring for autistic children coming up. Please use the links below to find out more and register your free place. Tuesday,...