1. Welcome!
This is a Survey on patients' views on motivations to start/stop therapy

DEADLINE: 29th April 2019

What is the main aim of this survey?
We would like to know your experiences with enzyme replacement therapy (ERT). If you are on ERT and above 15 years old please fill in the survey. Your opinion matters because we want to improve the situation and to have a good data set for discussion with physicians and pharma companies.

How is the survey organized? How long will it take me to complete it?
It contains 35 questions and will take about 15 minutes to fill in.

Please finish the whole survey.


This enables us access to a complete and representative data-set.

What will you do with my data?
Data will be collected and analysed by MPS Europe and will not be communicated to anyone outside. At the end of the analysis, the results will be presented on an expert meeting with physicians on European level. After the results will be used for further discussion with physicians and pharma companies in order to advocate for patients needs. Also the results will be presented and discussed at our next Adult MPS Patients Meeting 'Stand on your own' on 17-20 October in Verona, Italy.

Contact: Any further questions or concerns can be addressed to Marija Joldic at marija.joldic@mps-europe.org

Click the button below to start the survey. Thank you for your participation!

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* 1. Age:

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* 2. Country:

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* 3. Type of MPS:

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* 4. How long are you on enzyme replacement therapy (ERT)?
(please write a number and add months or years)

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* 5. Where do you receive ERT?

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* 6. How long did you have to wait for ERT after diagnosis?

0 of 35 answered