What do you need in your life with lupus?

[nakita_cambow]

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 [e-mail].

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

Thank you!

[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 Moderator in reply to StriatedCaracara]

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 in reply to nakita_cambow]

Brilliant🙂💯👍UCTD included 🤩

That is perfect. Thanks..

[StriatedCaracara in reply to nakita_cambow]

At the end is the demographic info including diagnosis.

'Undiagnosed' have a category too, I think 🙂

There is also an 'Other' category where any diagnosis can be written.

(Guess I could have put my 'UCTD (ANA postive, anti dsDNA)' diagnosis under 'other' had I thought.

I feel Undifferentiated CTD is different to Mixed CTD, we don't have multiple clinics and it can be hard finding any help

Really good survey..and don't need to answer questions you don't want to eg if don't apply yet.

[CecilyParsley]

Done thank you

[Poshcards]

all done x