* 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.Visit website
Training on translational medicine for patient advocates
*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.
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.