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The CHARGE Family Support Group is the UK’s registered charity for people with CHARGE Syndrome and their families.

The group’s aim is to create a positive, supportive network of individuals, parents, families and professionals to share ideas, experiences, information and give vital support.

The group is run by parents and grandparents of individuals with CHARGE and professionals with a particular interest in the condition. We work on an entirely voluntary basis and membership is free. New members are always welcome.

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Fanconi Anaemia (FA) is a rare, life-limiting genetic disorder causing bone marrow failure in children and a predisposition to gynaecological and head & neck cancers, together with other complications both in childhood and in later life.
Whilst the bone marrow failure element can be corrected through bone marrow transplantation from a well-matched donor, there is still no cure for the cancer-predisposing condition .
Fanconi Hope is a national charitable trust set up in 2008 by parents of FA-affected children and clinicians with an interest in FA to provide guidance and information for patients, families, clinicians and researchers.

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This website has been created by Genetic Disorders UK, the charity that organises Jeans for Genes Day, to provide teachers with engaging resources that can be used to help pupils learn about genes, inheritance and genetic disorders.

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Genetic Disorders UK (GDUK) is a new charity that provides much-needed advice and support for individuals and families affected by genetic disorders.

This site has been compiled by people with personal experience of genetic disorders. We will help you through diagnosis, day-to-day management of the disorder and the impact on your family. Our database will help you find other families in your position and advise how to set up your own support group. You are not alone.

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Jeans for Genes Day raises money for Genetic Disorders UK, the charity that aims to change the world for children with genetic disorders.

Individually, genetic disorders are rare but together they affect 1 in 25 children born in the UK - that's more than 30,000 babies each year. Their associated health problems mean that genetic disorders are the biggest cause of death of children aged 14 years and under.
Jeans for Genes Day
Jeans for Genes Day

Jeans for Genes Day is our annual fundraising event and takes place on Friday 5th October 2012. Ask your colleagues at work or the children at school to wear their jeans for the Day and make a donation.

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Nilsby.com is a free website where families with special needs children can ask any question relating to special needs - from legal advice, to how to deal with behavioral issues. Please come join us, and ask the questions that are on your mind in a safe and positive environment!

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We decided to build this website so that we can educate people on Grace’s condition and to raise awareness for Smith-Magenis Syndrome, a condition that affects 1 in 25,000 births.

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The Smith-Magenis Syndrome (SMS) Foundation is a small UK registered charity that supports families, who have children of all ages, with Smith-Magenis Syndrome and provides information for professionals working with these families.
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This support comes in many different forms;

*Providing information about SMS*
*Passing questions on to our board of professionals*
*Putting you in contact with other families close to you*
*Being there to listen, talk and share stories*

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Snowdrop provides evidence based programmes of neuro-developmental therapy for children with a wide variety of developmental disabilities such as cerebral palsy, autism, ADHD and many more. We also treat children with rare genetic disorders. Programmes, which are neuroscience based and designed to stimulate the plasticity of the brain are carried out in the child's own home by family and friends.

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The Sturge Weber Foundation UK is a voluntary support group for families and adults affected by Sturge-Weber syndrome, a rare neurological disorder. A registered charity, it was launched in 1990 as a independent group by the disability support organisation Contact a Family.

Sturge Weber syndrome
This is a rare disorder of unknown incidence and origin; although present at birth, it is NOT thought to be hereditary. Sturge Weber is usually indicated by a birthmark (port wine stain) somewhere on the face, usually involving the eye and forehead, also similar blood vessels on the brain, called an angioma. Those with SW often suffer from epilepsy, hemiplegia (a weakness or stiffness affecting one side of the body, similar in appearance to that of a stroke), glaucoma and learning difficulties. Symptoms usually occur in the child`s first year of life.

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Contact details ▼

London SE & SW: 01865 865089
Birmingham Midlands York Humber and East: 01283 711083
Wales NE & NW: 01625 427872
 

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TSC is a complex genetic condition caused by an alteration in a gene.
People with TSC have growths in different organs of the body (brain, heart, eyes, skin, kidneys, lungs) and may have epilepsy, learning disabilities, autism spectrum disorder and kidney problems.
Symptoms vary from one person to another with some people showing very few symptoms and others more severely affected.

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