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Take the EURORDIS Access Campaign Questionnaire

Setembro 2023

Have you experienced difficulties in accessing a treatment for your condition, including medicines, medical devices, surgeries, or medical consultations?

The EURORDIS Access Campaign Questionnaire is inviting anybody living with a rare disease who has experienced difficulties accessing treatment to respond to our brief online Questionnaire.

This Questionnaire is available in 19 languages, and aims to uncover the specific hurdles that rare disease patients encounter when seeking treatments. By gathering your experiences, we aim to shed light on issues like reimbursement gaps, transportation limitations, lengthy waiting lists, and more. These insights enrich our understanding of the obstacles faced by individuals requiring medicines, medical devices, or surgeries.

Results of our Questionnaire are analysed by trained EURORDIS staff and communicated to national and European-level Health Authorities, in order to facilitate solutions addressing access problems.

Where possible, individual responses to our Questionnaire can be shared with the corresponding national rare disease helpline (which would be the member of our European Network of Rare Disease Helplines (ENRDHL)), in order to directly facilitate improved access to treatments and enhance national analysis of treatment access problems.

Background to the Questionnaire

The EURORDIS Access Campaign Questionnaire was first launched in 2014 and extensively seeks qualitative responses regarding treatment access difficulties every three years.

Julien Poulain, Communications Manager