Geneticalliance.org.uk

Living with a genetic, rare or undiagnosed condition

WEBFor the sake of insurance, genetic tests are classed as predictive or diagnostic. See our FAQs for more information on insurance and genetic conditions, or get in touch at …

Actived: 7 days ago

URL: https://geneticalliance.org.uk/support-and-information/living-with-a-genetic-rare-or-undiagnosed-condition/

Better diagnosis and care for rare conditions

WEBWe champion timely diagnosis and better care for people living with rare, genetic and undiagnosed conditions. Through all of our work, we improve the lives of individuals and …

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Our reports and impact

WEBCoordinating Care: Learning from the experience of people living with rare conditions. For Rare Disease Day 2023 we launched our report highlighting a series of examples where …

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A-Z of genetic and rare conditions

WEBRare conditions. Contact is a charity for families with disabled children. Their website provides a searchable A to Z directory of medical conditions including a number of rare …

Category: Medical Go Health

Genetic, rare and undiagnosed conditions explained

WEBA rare condition is any condition that affects less than 1 in 2,000 people. There are over 7,000 rare conditions with more being discovered all the time through scientific progress. …

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Facts and figures

WEBFigures from Good Diagnosis (Genetic Alliance UK, 2022) and UK Rare Diseases Framework (Department of Health and Social Care, 2021) More than a third of people …

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Predictive testing

WEBPredictive testing. A predictive test can provide information about whether or not someone will develop or is likely to develop a specific condition, often later in life. The test is …

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Rare Resources guides

WEBThe Rare Resources guides have been produced by Genetic Alliance UK for families who have recently received a diagnosis of a genetic or rare condition, are on the journey to a …

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Direct-to-consumer genetic testing

WEBIn recent years the cost of genetic testing and whole genome sequencing has fallen dramatically, giving rise to ‘direct-to-consumer’ genetic testing. These are genetic tests …

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NHS Genetic Services in the UK

WEBWest of Scotland Regional Genetics Service. Laboratory Medicine Building, Queen Elizabeth University Hospital, 1345 Govan Road, Glasgow, G51 4TF Tel 0141 354 9201 …

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Rare Disease Day 2024

WEBRare Disease Day is an important international awareness day that takes place annually on 28 February (or 29 February in leap years). This date was chosen …

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Rare Conditions: The Stories Behind the Stats

WEBFor the third consecutive year, ITN Business is proud to be partnering with Genetic Alliance UK to produce a news-style programme. ‘ Rare Conditions: The Stories …

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Childhood intellectual disability and parents mental health

WEBChildhood intellectual disability and parents’ mental health: integrating social, psychological Q2 and genetic influences Q1 Kate Baker, Rory T. Devine, Elise Ng-Cordell, F. Lucy …

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Insurance and genetic conditions – FAQs

WEBAccessing appropriate insurance is a significant problem for many people affected by genetic conditions. We regularly receive helpline calls and emails from people affected …

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SWAN UK (Syndromes Without A Name)

WEBSWAN stands for syndromes without a name. It is not a diagnosis in itself, but a term used when a child or young adult is believed to have a genetic condition and testing has failed …

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Coordinating Care

WEBCoordinating complex medical care Many rare conditions are complex and require a multidisciplinary team to address them. Coordination between health

Category: Medical Go Health