EURORDIS – EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION training courses services

Provided by EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION

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*The EURORDIS Open Academy brings together all EURORDIS trainings with the goal of building the capacity of rare disease patient advocates.
Through the EURORDIS Open Academy capacity-building programmes, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development.

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EURORDIS – EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION patient empowerment and engagement services

Provided by EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION

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EURORDIS promotes the implementation of services adapted to the needs of people living with a rare disease and provides:
* Specialised Social Services are instrumental to the empowerment of people living with rare diseases and essential to the improvement of their well-being and health.
* RareConnect.org, the online network for rare disease communities, brings together patients, families, and groups from around the world who might otherwise be isolated
* Patient Community Advisory Boards (CABs) are groups established by patient advocates to discuss the latest developments, challenges and issues related to medical research in their disease area.
* Rare disease help lines offer social, psychological and information solutions to people living with a rare disease.

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EURORDIS – EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION reimbursement and financing services

Provided by EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION

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* Mechanism of Coordinated Access to orphan medicinal products (MoCA): is a platform where companies’ issues around reimbursement or financing schemes can be discussed with a variety of jurisdictions and societal perspectives. It provides a mechanism for European countries to collaborate on coordinated access to orphan medicines in a voluntary, dialogue-based approach, intended to create a fluid set of interactions between key stakeholders, across all aspects of a product.

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