What do you need in your life with lupus? - LUPUS UK

LUPUS UK

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What do you need in your life with lupus?

nakita_cambow profile image
nakita_cambowModerator
5 Replies

Lupus UK is 35 years old in 2025, and we are taking this opportunity to develop our aims and priorities for the next five years.

We are conducting a survey to understand what is important to you as someone living with lupus, or caring for someone with lupus, and what you think we should be focusing on.

Your voice matters, and we are listening. Your responses will help us understand where we should be focusing our attention and how, to support the needs of our community better.

The deadline to complete the survey is Thursday 1st May at 4:00pm (BST) and you can complete the survey here: surveymonkey.com/r/lupusuk-...

Parents, carers, or friends of someone with lupus are also welcome to complete the survey!

All questions are optional and the survey is anonymous. If you have any questions, please email HeadOffice@LupusUK.org.uk.

For more information, visit lupusuk.org.uk/2025/03/04/s...

Thank you!

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nakita_cambow profile image
nakita_cambow
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5 Replies
StriatedCaracara profile image
StriatedCaracara

Thanks for the survey Nakita.

Is this survey also open to forum members with lupus-like UCTD, as well as lupus diagnoses.

(If UCTDers can take part do we need to mention in our responses that our diagnosis is UCTD?)

Thanks for your help.

nakita_cambow profile image
nakita_cambowModerator in reply toStriatedCaracara

Hi there,

Thank you for your interest in taking part in our survey. You are more than welcome (and encouraged) to take part!! ☺️

The survey has a tick box question about the specific diagnosis of respondents, so you will be able to tick UCTD.

Have a lovely rest of your day!

StriatedCaracara profile image
StriatedCaracara in reply tonakita_cambow

Brilliant🙂💯👍UCTD included 🤩

That is perfect. Thanks..

(Also, 'Not yet diagnosed' and 'Other' included)

CecilyParsley profile image
CecilyParsley

Done thank you

Poshcards profile image
Poshcards

all done x

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