Genetic Alliance UK

formerly Genetic Interest Group (GIG)

http://www.geneticalliance.org.uk/

A UK-wide alliance of medical research and patient organisations with offices in Scotland, England and Wales. Our membership of over 140 charities support children, families and individuals affected by genetic disorders.

GIG’s primary goal is to improve the lives of people affected by genetic disorders by campaigning for high quality services that are timely, accessible and equitable for all. We also place a high priority on educating the public and health professionals about genetic conditions and the issues that patients face.

GIG in Scotland’s role is to :

• Work with the Scottish Government and NHSScotland to ensure better patient representation and involvement.

• Inform political and professional discussions about the resources needed to provide high quality genetic services for the future.

• Co-ordinate and support the work of voluntary groups for those affected by all forms of genetic disorder in Scotland.

• Develop links with services where genetics is a significant issue to encourage dialogue between patients, carers, voluntary organisations, the public and professionals.

• Contribute to public and professional education on genetic issues and developments and their impact on patients and families. GIG is on the steering committee for the Scottish Genetic Education Network (ScotGEN). Within this, GIG has been enabling genetic educational materials to become more accessible in the spheres of Family History and Genetic Counselling, Pregnancy and Newborn Screening and Public Health Issues for Genetics.

GIG is currently involved in the following projects:

• Patient Engagement Network
• Insurance Template Project
• Facilitating Networks Project
• Eurogentest and Translation Project
• Rare/Orphan Disease Project
• Genetics/Genetic Healthcare Policy Project
• Cystic Fibrosis Newborn Screening: From the perspectives of patients and health professionals.