Neuroacanthocytosis disorders Also known as: Chorea-acanthocytosis; McLeod syndrome Background The term neuroacanthocytosis refers to a group of rare inherited conditions that result in abnormalities of the nervous system. Key features include abnormal...
Families ‘drive around the world’ at Silverstone! A grant from the Masonic Charitable Foundation meant we were able to offer 37 Northampton families the chance to experience the magical ‘Lap of Lights’ at Silverstone racetrack last week...
Pendred syndrome Also known as: Deafness with Goiter; Goiter-deafness syndrome Background Pendred syndrome (PS) was discovered in 1896 by Vaughan Pendred. It is a genetic condition that causes early hearing loss in...
Myotubular Myopathy Also known as: Centronuclear Myopathy Background The myotubular or centronuclear myopathies (CNMs) are a group of rare inherited neuromuscular diseases. There are three forms, each with distinct inheritance patterns: X-linked...
Two child limit on benefits pushing families with disabled children further into poverty New research from the End Child Poverty Coalition (ECPC) shows that the government’s current two-child limit on benefits policy is pushing families with disabled children even further into poverty. The...
Court of Appeal judgment on school transport loophole The Court of Appeal has found that Leicestershire County Council's policy to cut school transport for 16-18 year olds does not discriminate against Kirsty Drexler, a disabled youngster who needs...
Fibrodysplasia Ossificans Progressiva Also known as: Generalised mysositis ossificans; Myositis Ossificans Progressiva; Stone man disease Background Fibrodysplasia ossificans progressiva (FOP) is a rare, progressively disabling condition caused by formation of bony bars within...
Healthcare in England As you navigate the NHS, it can be useful to know how the system is structured.
Urea Cycle disorders Background In humans, protein rich foods are broken down to make energy for our bodies. After the energy is used up, waste substances like nitrogen are created. In the body,...
Tell your MP to #SENDABetterMessage Today, the Disabled Children’s Partnership (DCP) is calling on the government to use its SEND reform programme to create a more just, fairer system of support for disabled children and...
Selective Mutism Background A crucial diagnostic element of selective mutism (SM) is that the child has the ability to both comprehend spoken language and to speak, but yet fails to do so...
Optic Nerve Hypoplasia Also known as: Optic Nerve Head Hypoplasia Optic nerve hypoplasia (ONH) is a congenital condition (present at birth) in which there is underdevelopment of the optic nerve. ONH can be...
Direct payments for disabled children’s social care: your top questions answered Last week’s Facebook Q&A about accessing direct payments for children’s social services in England was one of our most popular yet, with over 120 parent carers asking questions to our advisers. If...
Thanks to families showing support for Out of Energy campaign We were blown away by the incredible support we received from families throughout our successful Out of Energy campaign. Our campaign called on the government for targeted support for disabled...
Marfan syndrome Background A person with Marfan syndrome will usually be characteristically tall and slim, with lax or hypermobile joints (see entry Hypermobility syndrome). Most are shortsighted. Credits Medical text written November...
9/10 families unable to find suitable holiday club for their disabled child this summer BBC News have exclusively revealed our new findings that show nine out of 10 families have been unable to find a suitable holiday club or activity for their disabled child...
Get instant help for your disabled child with Charlie the Chatbot Have you seen this picture pop up on your screen when you’ve been looking at our website recently? Meet Charlie the Chatbot – the latest addition to our team who...
Disabled children still excluded from school more than non-disabled peers New data released by the Department for Education (DfE) shows that pupils with special educational needs (SEN) in England continue to be more likely to be permanently excluded or suspended...