The story
1989: The group was founded in 1989 as Genetic Interest Group, after a group of approximately twelve charities proposed an alliance, with the backing of the British Clinical Genetics Society.
1993: Genetic Interest Group became a founding member of the European Alliance of Genetic Support Groups (EAGS) – now known as the Patients’ Network for Health and Medical Research (EGAN).
1995: The Disability Discrimination Act passed. Genetic Interest Group lobbied to amend the Bill to ensure people pre-symptomatic for a genetic disorder would be protected against discrimination.
2003: Genetic Interest Group lobbied the Department of Health for more investment in rare disease research. There was a successful outcome in the White Paper on genetics on 24 June 2003, with £3 million earmarked to fund research into rare diseases.
2008: The Human Fertilisation and Embryology Act 2008 passed. Genetic Alliance UK's lobbying work influenced the law on a number of issues including preimplantation genetic testing, saviour siblings and human-animal hybrid embryos.
Rare Disease UK was launched to campaign for a strategic approach to rare diseases in the UK.
2010: Genetic Interest Group became Genetic Alliance UK - the decision was made to change the name and branding of the organisation to better reflect its work.
2011: SWAN UK (syndromes without a name) was relaunched as a project of Genetic Alliance UK, to continue supporting families of children with a syndrome without a name – taking over from Liz Swingwood, the grandmother of a child with an undiagnosed genetic condition.
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2013: The UK Strategy for Rare Diseases was launched in November following years of hard work by our Rare Disease UK campaign.
2014: Genetic Alliance UK published its first patient charter, on the NICE Highly Specialised Technology Programme. Five patient charters on access to medicines and on genome sequencing have now been published.
2020: Genetic Alliance UK, through their campaign Rare Disease UK, held the first ever rare disease film festival in the UK to both showcase and broaden the reach of rare disease focused film projects.
From Wikipedia’s article on Genetic Alliance UK, shared under CC BY-SA 4.0.4