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In line with this year's theme of Care, EURORDIS has launched a survey to gather information about the difficulties people with rare diseases and conditions face with regard to accessing their treatment. They invite you to share your experiences, which they will use in their advocacy work and lobbying at national level. Are personal payments creating financial difficulties? Are there long waiting lists? Is the type of treatment or care you need not available close to where you live? What is the impact on your health, on your quality of life? Please take the time to fill out the EURORDIS questionnaire. It is available in 19 European languages. Thank you!
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. EURORDIS does not have the resources to respond to individual cases; they will not communicate the results directly to you, but you will be able to read the outcomes of this campaign on the EURORDIS website.
Founded 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: www.eurordis.org