ERN ReCONNET questionnaire

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LUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire linked below to reach as many patients as possible.

The link below goes to the generic survey in English. The LUPUS EUROPE secretariat (secretariat@lupus-europe.org) also has links to the survey in Portuguese, Dutch, Romanian, Italian, German, Slovenian and should soon receive French.

Therapeutic Patient Education needs: Questionnaire for patients

We are asking you to please relay the link through your social media channels and encourage your members to participate.

ERN survey on awareness and knowledge of clinical practice guidelines

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An ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018.

These surveys provide vital information to the doctors and researchers setting guidelines for our care.

This survey can be filled in by patients or their families or caregivers. It applies to people with lupus but also those with rare or complex connective tissue disorders.

For more information about the ERN and the survey, please click here.