Rothmund-Thomson syndrome is a very rare genetic condition. Individuals with the condition display to slow growth, have sparse hair and skin problems as well as other symptoms. In this podcast a mother describes what it is like to have a child with the syndrome. Click here to listen to the podcast

Rothmund-Thomson syndrome is a very rare genetic condition. Individuals with the condition display to slow growth, have sparse hair and skin problems as well as other symptoms. In this podcast a mother describes what it is like to have a child with the syndrome.

Click here to listen to the podcast

Families come in all shapes and sizes and having a disabled child or child affected by a long-term health condition has an effect on the whole family. Parents often contact us concerned about how to support the brothers and sisters of their disabled child. In this podcast a sibling talks about her experience and the impact on her life.
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There are many chromosome disorders and each has different features. This podcast is an interview with a Mother whose son has a disorder affecting chromosome 9 which was recently named Kleefstra syndrome. The condition was previously known as 9q34.3 syndrome or 9q syndrome. Click here to listen

Dravet syndrome is a rare type of epilepsy. In this podcast a father talks about his experiences of having a child with this condition. Click here to listen

McCune-Albright syndrome is a rare genetic disorder affecting the bones and skin pigmentation. It is also associated with endocrine problems. In this podcast an adult talks about how McCune-Albright syndrome has affected her life. Click here to listen

Polymicrogyria is a condition characterised by abnormal development of the brain before birth. The surface of the brain normally has many ridges or folds, in Polymicrogyria the brain develops too many folds and these are unusually small. In this podcast a mother talks how Polymicrogyria affects her daughter and family life

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Hirschsprung's disease is a condition where the nerves cells of the large intestine are absent, so normal bowel movement is not possible. In this podcast a mother talks about what it is like to have a son with this condition.

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Carer's Allowance is extra money for carers who care for someone who receives the DLA care component at the middle or highest rate. In this podcast one of the Contact a Family helpline advisers provides a little more information about this benefit, eligibility criteria and how to claim. Click here to listen

The group of diseases known as Batten disease or the neuronal ceroid lipofuscinoses (NCLs) are rare, genetic, progressive neurodegenerative, metabolic diseases that occur in children and adults worldwide. This podcast is an honest account of a mother's experience of having a son with Juvenile Batten disease.

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Disability Living Allowance (DLA) is the main benefit for disabled people and is there to help meet any extra costs of being disabled. Listen to this podcast to hear the Contact a Family helpline advisers provide more information about this benefit.

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This podcast is an honest interview with mother of a girl who has Neuronal Migration Disorder.

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All parents want their children to do well at school. Some children may need more support than others to achieve their potential and this may be because they have a disability, medical condition or other additional needs. This podcast is an interview with two of Contact a Family's helpline advisers that provides information about the different levels of support for children with special educational needs (SEN) and what you can do if you are not happy with the support your child gets. If you need further clarification of any of the points discussed call the Contact a Family freephone helpline.
Special educational needs podcast

ESA came into effect in October 2008 and replaced Incapacity Benefit and Income Support. This podcast is an interview with a Contact a Family adviser and provides more details about this benefit.

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It costs more to raise a disabled child and some families need additional financial help. This podcast provides an overview of what the social fund is and the sort of things it can help fund.

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Contact a Family receives funding from a number of sources which help us provide a range of services for families. Our Lewisham Office, thanks to funding from the borough council, has been able to offer some families in the borough the opportunity to have a weekend away with other families. Listen to the parents talk about what the experience means to them and their families.

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This podcast is about Contact a Family's Cash Counts service, a new online service dedicated to ensuring families with disabled children are getting every penny.

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This podcast is an honest account of a parent's experience of having a child affected by Gorlin syndrome.

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This podcast is an honest account of a person affected by Niemann Picks disease, type B.

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This podcast is an honest account of a mother's experience of having a child with Soto Syndrome.

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