3rd Floor 86-90 Paul Street London EC2A 4NE Registered address: The Clock Tower 5 Farleigh Court Old Weston Road Flax Bourton Bristol Genetic Alliance UK is a national charity supporting people affected by genetic, rare and undiagnosed conditions.

It has campaigned for improved regulation and governance of clinical research, improved access to new technology such as preimplantation genetic diagnosis, and has responded to Government consultations on the restructuring of the National Health Service between 2010 and 2012 to ensure that the needs of those with genetic conditions are properly addressed.

It also works on gathering evidence of need through research projects and on directly improving information and services to patients.

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.

2014: Genetic Alliance UK published its first patient charter, on the NICE Highly Specialised Technology Programme.

It focuses on the unmet healthcare needs of families with inadequate access to integrated care and support from the National Health Service.

[4] It aims to ensure the efficient use of scarce expertise, and promote the targeted use of health care resources to maximise benefits for all patients and families affected by rare diseases in the UK.