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FH information Links

Below are a number of links to resources and information about FH.

Charities Involved with FH

A major cardiac charity in the UK. BHF is a partner in the Wales FH Service, specifically supporting FH specialist nurses. The BHF also provides specific FH information.
This includes a detailed FH patient information booklet.
The BHF website also features the story of an FH Wales patient Suzanne Sheppard.
A national charity for patients and their families which has a specific interest in FH. This is a combined patient and health professionals organisation.
HEART UK toolkit for implementation of the NICE guidance on the identification and management of FH.
The HEART UK campaign 'Heart of the Family' has been created to raise awareness of FH, and early screening for FH as early diagnosis and treatment can help save lives and break family cycles of premature heart disease. The campaign includes the stories of four inspirational people living with with FH.


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Heath Professionals

In August 2008, the National Institute for Health and Clinical Excellence (NICE) published a clinical guideline (CG71) for FH. The guideline contains recommendations for the identification and management of FH in adults and children/young people. NICE is the independent organisation responsible for providing nation guidance on the promotion of good health and the prevention and treatment of ill health.
It provides a thorough evidence base, based on clinical and economic analysis. The NICE guideline was reviewed in 2011 and re-issued with minor updates as it was still regarded as valid and fit for purpose.
The website included the full guideline but also brief and more readable summaries. In Wales the NHS has been committed to implementing the FH guideline.
NICE has also prepared a "Quality standard" for FH based on the full NICE clinical guidance . The quality standard is a very "pithy" version of the main guideline designed to summarise the key elements that need to be commissioned for an FH service to be implemented.
RCP carried out an audit of the implementation of the NICE FH guideline in 2010. This largely pre-dated the full implementation of the Wales FH service.
This is an international database of DNA variants that have been described as causing or possibly causing FH. It is primarily for the use of laboratory specialists who carry out DNA diagnostic tests. All information in this database is anonymous and helps share expertise nationally and internationally to achieve a better understanding of the different DNA changes associated with FH.
The Cardiac Networks of Wales were established is September 2002 to take forward the implementation of the NSF for Coronary Heart Disease. The overall Cardiac Networks Coordinating group was wound up in 2012 and is now delivered by a cardiac network for North Wales and South Wales.
The Wales Gene Park is a “virtual” park that brings together the expertise in genetics in Wales to facilitate knowledge transfer from University research to the NHS and commercial sectors.  It has active programmes in professional education and public involvement.  The Wales Gene Park via Cardiff University has been active in supporting the development work for the Wales FH service, the IT systems, and also supported the establishment of the Wales FH family forum via Genetic Alliance.
Genetic Alliance (formerly Genetic Interest Group) is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders.
The charity working with the Wales Gene Park was very supportive of the initial development of the Wales FH Family forum in 2006-2008.    
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