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'Genetic Interest Group' changes name to 'Genetic Alliance UK'

01 June 2010

By Maren Urner

Appeared in BioNews 560

The UK's 'Genetic Interest Group' (GIG), a national charity representing individuals with genetic conditions, today became the 'Genetic Alliance UK'.

The change of name is a reaction to the increased diversity of activities of the charity during the last few years: a recent poll among stakeholders of the GIG suggested the name does not represent the broad range of work performed by the charity.

Celebrating its 20th anniversary last year, the GIG asked members and potential members whether its name reflected the mission of the charity accurately. The results revealed that their work was not always well understood, and the organisation hopes to provide better insight into the voices they represent with the new name 'Genetic Alliance UK'.

Having more than 130 member organisations, the GIG works with patient groups, charities, individuals and families affected by genetic conditions including rare and complex conditions. The primary goal of the charity is the promotion of awareness and understanding of genetic disorders to support the development and availability of high quality services for people with genetic conditions. The work includes policy campaigns talking to Members of Parliament, the National Health Service, and policymakers, as well as participation in research projects tackling problems important to the members. These include the improvement of access to information related to genetic conditions and the development of networks of experts to improve services for patients.

Current estimates state that 60 per cent of the people living in the UK are likely to develop a disease that is at least partially genetically determined by the age of 60. Also, approximately one in 30 children is born with a certain kind of genetic condition. The GIG - being now the Genetic Alliance UK - uses these statistics to highlight the importance of their current and future work.

The Genetic Interest Group is Changing
Genetic Interest Group | 27 May 2010


17 January 2011 - by Stephen Nutt 
A report released recently by Rare Disease UK (RDUK) demonstrates how patients and families affected by rare diseases frequently have problems accessing good quality services, care and support. The report, 'Experiences of Rare Diseases: An Insight from Patients and Families'[1], is based on a survey of 600 patients and families conducted by RDUK to examine a wide range of topics pertinent to patients with rare diseases: diagnosis, participation in research, access to treatment, information, ...

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