Genetic Alliance UK
|Alastair Kent (Director),|
|Genetic Interest Group (GIG)|
Genetic Alliance UK is a national level umbrella charity for 180 patient organisations, funded by grants and memberships, supporting those affected by genetic disorders. Its aim is to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available.
The group's work is primarily policy campaigns. It has campaigned for improved regulation and governance of clinical research, including animal 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.
The group also commissions projects covering issues of common interest to its members; these have included insurance, prenatal diagnosis, patient access and patient information. It also works on gathering evidence of need through research projects and on directly improving information and services to patients.
The work has expanded outside the United Kingdom into the European Union. The group works through EGAN (European Genetic Alliance Network) to promote the interests of those with genetic conditions at European Commission and European Parliament.
The group was founded in 1988, when a group of approximately twelve charities proposed an alliance called the Genetic Interest Group, with the backing of the British Clinical Genetics Society, In 2010, the name was changed to Genetic Alliance UK.
The group now represents over 180 voluntary organisations and has representation on numerous bodies in the UK, Europe and the rest of the world.
Rare Disease UK
Rare Disease UK (RDUK) is a joint initiative of Genetic Alliance UK with other interested bodies. It focuses on the unmet healthcare needs of families with inadequate access to integrated care and support from the National Health Service. 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.
Its programme advocates a coherent UK national strategy consisting of:
- Research into rare diseases
- Prevention and diagnosis of rare diseases
- Treatment of rare diseases
- Information on rare diseases for patients and the public
- Planning and actual commissioning of rare diseases facilities
- Care and support for rare disease patients
In the past decade, there have been innovative strategies for the establishment of multidisciplinary centres of excellence for patient and family care. The group plans to build on this existing infrastructure and expertise to expand the nationwide availability of such resources.
The Rare Disease UK initiative is based on the European Council's Recommendation for action in the field of rare diseases. The recommendation stressed strengthening research programmes in the field, encouraging the development of national rare disease policies, and developing and sharing common European guidelines, such as access to high quality information.
- "Genetic Alliance UK homepage". Genetic Alliance UK. Archived from the original on 16 August 2014. Retrieved 19 August 2014.
- UK charity becomes Genetic Alliance UK phg foundation 7 June 2010
- "Rare Disease UK Background Information". Rare Disease UK. Retrieved 19 August 2014.
- "Rare Disease UK - Why a national plan is required". Rare Disease UK. Retrieved 19 August 2014.
- "Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy" (PDF). Rare Disease UK. Archived from the original (PDF) on 19 August 2014. Retrieved 19 August 2014.