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Improving the lives of people with

Primary Immune Deficiency

National and International Links

UKPIPS is a member of various organisations that promote awareness of PID and PAD and provide support to each other.

Rare Disease UK works with supporters (including UKPIPS) to raise the profile of rare diseases across the UK. It also works with health departments across the UK to implement the UK Strategy for Rare Diseases.

https://www.raredisease.org.uk/

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/950651/the-UK-rare-diseases-framework.pdf

 

Genetic Alliance UK is a national alliance of organisations which support children, families and individuals affected by genetic conditions.

https://geneticalliance.org.uk/

 

We also have links to other organisations that can help us to provide support to our community and help us to understand and support our role as a charity employing individuals and volunteers. Some of these organisations are:

Australia PIPS Support –  www.auspips.org.au

Website assistance        –  www.nervenet.co.uk