EURORDIS News- Rare Diseases Europe has been formed in order to help people living with a rare disease and concentrates on the social challenges faced by rare patients like : The gaps in coordination between medical-social and support services .
This foundation is developing day by day and aims to link health services with the social and support services that rare patients undoubtedly need during their daily affairs. INNOVCare (Innovative patient-centered Approach for Social care provision to Complex conditions) will focus on the voice of people living with rare diseases; therefore they can map specialized social services to support their needs.
EURORDIS Role is:
– Focusing on the internal & external projects in order to improve the conditions for patients.
– Collecting information of patients & their families as well as searching for finding the methods of treatments
– Facilitating the creation of an European network of resource centers to ensure exchange of good practices
-Social challenges faced by rare disease patients
Rare diseases often do not have a satisfactory treatment or any treatment at all. As a result, the need for integrated care provision is crucial to alleviate the impact that a rare disease has on the daily life of the patient and their family.
Social and daily challenges faced by people living with a rare disease and their families include, for example, the necessity to reduce or stop professional activity or education. Living with a rare disease can also bring about challenges regarding domestic tasks, transport and mobility, leisure activities, self-care, financial burden and discrimination in the labour market.