Genetic Alliance UK
Encyclopedia
Genetic Alliance UK is a national level umbrella charity
for 130 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.
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
, pre-natal 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 now represents over 130 voluntarily organisations and has representation on numerous bodies in the UK, Europe
and the rest of the world.
. 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
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 nation-wide availability of such resources.
This 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.
Charitable organization
A charitable organization is a type of non-profit organization . It differs from other types of NPOs in that it centers on philanthropic goals A charitable organization is a type of non-profit organization (NPO). It differs from other types of NPOs in that it centers on philanthropic goals A...
for 130 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.
Activities
The group's work is primarily policy campaigns. II has campaigned for improved regulation and governance of clinical research, including animal research, improved access to new technology such as pre-implantation genetic diagnosis, and has responded to GovernmentGovernment
Government refers to the legislators, administrators, and arbitrators in the administrative bureaucracy who control a state at a given time, and to the system of government by which they are organized...
consultations on the restructuring of the National Health Service
National Health Service (England)
The National Health Service or NHS is the publicly funded healthcare system in England. It is both the largest and oldest single-payer healthcare system in the world. It is able to function in the way that it does because it is primarily funded through the general taxation system, similar to how...
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
Insurance
In law and economics, insurance is a form of risk management primarily used to hedge against the risk of a contingent, uncertain loss. Insurance is defined as the equitable transfer of the risk of a loss, from one entity to another, in exchange for payment. An insurer is a company selling the...
, pre-natal 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
United Kingdom
The United Kingdom of Great Britain and Northern IrelandIn the United Kingdom and Dependencies, other languages have been officially recognised as legitimate autochthonous languages under the European Charter for Regional or Minority Languages...
into the European Union
European Union
The European Union is an economic and political union of 27 independent member states which are located primarily in Europe. The EU traces its origins from the European Coal and Steel Community and the European Economic Community , formed by six countries in 1958...
. The group works through EGAN (European Genetic Alliance Network) to promote the interests of those with genetic conditions at European Commission
European Commission
The European Commission is the executive body of the European Union. The body is responsible for proposing legislation, implementing decisions, upholding the Union's treaties and the general day-to-day running of the Union....
and European Parliament
European Parliament
The European Parliament is the directly elected parliamentary institution of the European Union . Together with the Council of the European Union and the Commission, it exercises the legislative function of the EU and it has been described as one of the most powerful legislatures in the world...
.
History
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 130 voluntarily organisations and has representation on numerous bodies in the UK, Europe
Europe
Europe is, by convention, one of the world's seven continents. Comprising the westernmost peninsula of Eurasia, Europe is generally 'divided' from Asia to its east by the watershed divides of the Ural and Caucasus Mountains, the Ural River, the Caspian and Black Seas, and the waterways connecting...
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 health care needs of families with inadequate access to integrated care and support from the National Health ServiceNational Health Service (England)
The National Health Service or NHS is the publicly funded healthcare system in England. It is both the largest and oldest single-payer healthcare system in the world. It is able to function in the way that it does because it is primarily funded through the general taxation system, similar to how...
. 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 nation-wide availability of such resources.
This 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.