Would You Like To Help Research For Hughes Syndrome?

Here is a link to a Patient Engagement Survey that you may like to take part in. The people behind it have received a large grant to help conduct research into our disease.

This is a quick survey so only takes a few minutes to answer the questions.


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11 Replies

  • I tried to click on the link in their inquest but it did not happen anything. Perhaps not for Swedish sufferers.


  • I can't get onto it either even after downloading the requested app.

  • I'll look into it as had no issues on twitter yesterday.

  • Ok try the new link above it should work!

  • Done now 👍(I've cheated and done it twice as I got one from the APS charity yesterday as well, hasn't realised both were same at first !)

  • Great. MaryF x

  • Completed, thanks.

  • Next?

  • Done didn't have any problems accessing the survey and it only took a few minutes to complete

  • Come on now....

  • Is this still in process? What/ where can we read results?

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