Share your views on the new standards for keeping patient data secure - closing date September 7th

[Suzym2u]

This is an important issue for all those with a rare disease. Future research into rare diseases requires sharing clinical data and anonymised patient records.

Please follow this link for more details

m.healthwatch.co.uk/news/pa...

[pwc51]

Questionnaire completed - I encourage everyone to do the same

[Suzym2u Moderator Vasculitis UK in reply to pwc51]

Would certainly agree and it is very straight forward and easy to complete 😊

[Sima1952]

All done Suzy. I particularly liked the idea that you could leave an opinion if you wanted to.

[AndrewT]

Dear Susan,

I didn't get a Survey, just a link giving information-down the left hand side. Am I doing it wrong? Yes thought so! Can you advise me further, I would like to comment, on this survey.

Warmest wishes to John please.

AndrewT

[Suzym2u Moderator Vasculitis UK in reply to AndrewT]

Hang on , I will have a look Andrew 😊