Looking for people with experience of lupus affecting the kidneys (lupus nephritis) to review patient materials about a new treatment

[Debbie_kinsey]

Do you have experience of lupus affecting your kidneys (lupus nephritis)? Would you be interested in giving feedback on some patient information for a new lupus nephritis treatment? You don’t need to have had any experience of doing this before, you just need to give your opinion. The company who makes the drug will use all the feedback to improve the leaflet and make sure it's telling patients what they want to know.

You will be asked to look at an information booklet about a new drug called voclosporin and asked what you think about it, for example how easy it is to understand, if there is any information missing that you would want to know, and what you think about how it looks. We will meet to discuss everyone’s thoughts and ideas at a focus group online via Zoom on Thursday 6th July at 5:30pm. If you can’t come to the focus group or would prefer not to, you can give feedback individually via email or over the phone.

If you’re interested in taking part or would like to find out more, you can contact Debbie Kinsey at [e-mail] or 01708 731251. Feel free to also ask any questions in reply to this post.

Take care

Debbie

[TychoLBM]

Hi there,

My son could review this if helpful, though we are on holiday till the 11th. He is 11.

Best wishes

Liz

[Debbie_kinsey Administrator LUPUS UK in reply to TychoLBM]

Hi Liz

Thank you for getting in touch. I should have mentioned that the treatment is currently only approved for adults, so I'm looking for adults with lupus nephritis. But thank you and your son so much for offering. I hope you are enjoying your holiday!