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Wednesday, September 24, 2014

Treatment Access 2014 Campaign

The European Organisation for Rare Disease asked MEBO to invite members of our community to report difficulties in accessing care before 30 September 2014 by filling out their anonymous questionnaire. Concise, short and accurate answers are preferred. Please be a participant in this campaign. Below is the message MEBO received from EURORDIS asking for volunteers.


The 2014 campaign ends in a few days 

Invite your members to report difficulties in accessing care 

before 30 September 2014!

Access Campaign!

Are you facing difficulties accessing your treatment? Please report them to us
We would appreciate if you could take a few minutes to complete this anonymous questionnaire. Concise, short and accurate answers are preferred. Please take your time.
The collected data will be processed by trained staff in order to point out (via the reports which will be available) the existing problems to the National Health authorities and engage in a dialogue with them. We do not have the resources to respond to individual cases.
We will not communicate the results directly to you, but you will be able to read the outcomes of this campaign on the EURORDIS website (a specific "Access Campaign" page will be created). Thank you for your time. 

EURORDIS - Rare Diseases EuropeFounded in 1997, the European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of organisations and individuals active in the field of rare diseases in Europe. EURORDIS represents over 600 rare disease patient organizations in more than 50 countries, covering more than 4000 rare diseases (for more information:


François Houÿez
+331 56 53 52 18
Director of Treatment Information and Access
European Organisation for Rare Diseases 

María de la Torre
Founder and Executive Director

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