Support groups in the UK

[mixie]

Hi everyone I'm new to this but I was wondering if there were any support groups running around the UK. If there are how can I find out more information about them. Thanks

[s162216]

Hi mixie

Welcome to the forum! If you look down on the main page you'll see an area called "Useful Organisation Links and Other Patient Resources" which has links and descriptions of some of the main PID patient support organisations around the world. In the UK at the moment there are two main support charities, but I would personally recommend "Primary Immunodeficiency UK" (PID UK)as they are a well run, very organised group who do their very best to support those with PID; they are also the UK national member of the International Patient Organisation for Primary Immunodeficiencies (IPOPI) who are a worldwide patient support organisation.

PID UK quite happy to answer any questions that you have, and give information and advice about PID related problems e.g employment. They also produce some great information leaflets which have to go through their medical advisory panel of expert immunologists to ensure accuracy, and also through their patient rep panel who help to produce and edit the leaflets as well as giving a patient/carers perspective. If you sign up to their newsletter you'll receive about 3 newsletters a year by email as well as quick updates every month or so.

You can find PID UK at www.piduk.org/ I'm also myself on their patient rep panel, and if you have any questions on here then I'm happy to forward them on to Susan Walsh (the PID UK director) if you private message me them. You can of course just contact them yourself by email, phone or post if you go to www.piduk.org/contactus/

Thanks, and I hope you find this useful.

Sam (Admin).