Alpha 1 Global

United Kingdom


Welcome to the UK Alpha-1 page.

The Alpha-1 Alliance is a unique coalition of Alpha-1 patients and leading clinicians in the field across the UK. The Alliance was established in 2012 to raise awareness of the condition and to campaign for the creation of a nationally specialised service for patients with Alpha-1 to ensure access to care for all aspects of the disease within the UK’s healthcare system (NHS).

The Alliance has been campaigning to ensure that Alpha-1 patients become and remain a political priority both in England and Scotland. In England, the Alliance has engaged with key senior politicians, including the Secretary of State for Health, to raise awareness of the condition and to push for the provision of adequate and comprehensive health services for Alpha-1 patients, whose needs have long been left unaddressed. Earlier this year, the Alliance submitted an application for an Alpha-1 national service to NHS England, which received the endorsement of expert clinicians in the field and the wider respiratory clinical community and which has progressed to the next stage in the complex review process. In parallel, the Alliance is extending the scope of its campaign in Scotland to achieve optimal care for Alpha-1 patients across the UK.

For more information about the Alpha-1 Alliance and recent updates on the progress of our campaign, please visit our website: www.alpha-1-alliance.org.uk

The Alliance invites patients in the UK to join the global discussion regarding issues pertaining to Alpha-1. While we are in the midst of our own campaign, others may be served by ideas and suggestions to obtain access to better care in their own countries.

Sincerely,

Alpha-1 Alliance UK

Alpha-1 Global is pleased to recognise the two patient organisations active in the United Kingdom:

Alpha-1 UK Support Group: www.alpha1.org.uk
Alpha-1 Awareness UK: www.alpha1awareness.org.uk

 

Access to care

Are free A-1 tests available?   Yesunited-kingdom

Are serum level tests available?   Yes

Are genotyping tests available?  Not known

Are phenotyping or pi-typing tests available?   Not known

Is augmentation therapy available?   No

Are A-1 treatment centers available?   No

Is supplemental oxygen available?   Yes

Are respiratory medications available?   Yes

Is pulmonary rehabilitation available?   Yes

Is Genetic counseling available?   Yes; in some places

Resources

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HEALTHCARE PROVIDER



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ADVOCACY


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