Are you a patient or carer of someone living with a rare disease?
EURORDIS, (eurordis.org) a European non-profit and non-governmental patient-driven alliance of patient organisations, has launched a survey to better understand the needs of people living with a rare disease and their families in terms of social care and coordination of care.
They are looking for opinions and experience from those living with a rare disease as part of an EU-funded project that will support European countries in implementing necessary changes in social care systems.
If you have time to spare to complete the survey they would be very grateful. Please visit: sphinxonline.com/SurveyServ...
Many thanks
Carol