Thyroid UK continues to work productively with other organisations to promote and establish the best of care through meaningful dialogue with clinicians. In order to further our aims, we are members of or are involved in the work of the following organisations:
Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. They are an alliance of over 200 patient organisations.
They are home to Rare Disease UK – the national campaign for people with rare diseases and all who support them – and SWAN UK (syndromes without a name), the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK.
Their aim is to ensure that high-quality services, information and support are provided to all. They actively support research and innovation across the field of genetic medicine.
The James Lind Alliance is a non-profit making initiative, being developed under the direction of a broadly-based Strategy and Development Group. Its Secretariat is funded by the Medical Research Council and the Department of Health.
The James Lind Alliance aims to identify the most important gaps in knowledge about the effects of treatments and has been established to bring patients and clinicians together in “Priority Setting Partnerships” to identify and prioritise the top ten unanswered questions that they agree are most important. This information will help ensure that those who fund health research are aware of what matters to patients and clinicians. Thyroid UK keeps up to date with the Alliances projects and plans to work in partnership with them in the future.
National Voices is the coalition of charities that stands for people being in control of their health and care.
They want person-centred care: people having as much control and influence as possible over decisions that affect their own health and care – as patients, carers and members of communities. They want people to be partners in the design of services and partners in research, innovation and improvement.
National Voices has helped Thyroid UK in its campaigning.
The Patients Association is an independent patient charity campaigning for improvements in health and social care for patients.
They work with patients directly who benefit from their help and advice services. They have a helpline that supports thousands of people each year with their concerns and queries about the health and social care system.
They also speak to the government, the NHS and other stakeholders about patients’ priorities and concerns, to ensure the patient voice is heard and acted upon.
They have lots of very helpful patient information leaflets.
The Fundraising Regulator is the independent regulator of charitable fundraising in England, Wales and Northern Ireland. They stand up for best practice in fundraising, in order to protect donors and support the vital work of fundraisers.
They work in partnership with other regulators and representative bodies in the charitable and fundraising sectors to build public confidence and ensure consistent fundraising standards across the UK.
They regulate all fundraising in England, Wales and Northern Ireland carried out by charitable institutions and third-party fundraisers including charities registered with the Charity Commission for England and Wales and the Charity Commission for Northern Ireland.
Date updated: 19.09.23 (V1.3)
Review date: 19.09.24
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