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Eurodis

EURORDIS is conducting an internet-based survey in an effort to better understand how well patients are engaged in medical care, including the relationship with health care providers, the understanding of the therapy (its efficacy, possible difficulties, benefits as they see them), reasons why they agreed to take this therapy, as well as if they are satisfied with the information they were given.

This study is being conducted by EURORDIS, under the guidance of the DITA Task Force.

Please click here to access the survey (in English)

This survey is also available in other languages:
En français (French): ici
Auf Deutsch (German): hier
En español (Spanish): aqui
Italiano (Italian): qui
Português (Portuguese): aqui
Pусский (Russian): здесь

This survey has been prepared by EURORDIS DITA task force (Drug Information, Transparency and Access).

This study received a positive opinion from the INSERM Ethics Evaluation Committee /IRB00003888 on 9 June 2015.

EURORDIS thanks  you in advance.

Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease