The Association for Rare Diseases and Developmental Disorders of Totana "G'Genes" has applied for membership of the European Platform for Rare Diseases "EURORDIS", based in Paris.
This initiative has been launched with the aim of improving the work done by this association and to continue to be present in the forums for disseminating information to the European level, D'Genes has requested and processed for incorporation into the record Eurordis.
D'Genes Once a part of this platform, this partnership will participate in all the forums to exchange information and experiences and in turn, can benefit from all services provided by this platform, which enables families to maintain contact with rare diseases in other European countries and the world.
The European Organization for Rare Disorders, EURORDIS, is a federation of patient organizations and individuals active in the field of rare diseases led by patients.
Eurordis's mission is to build a pan-European community of patient organizations and people living with rare diseases, to be spokesman for his call on the European level, and directly or indirectly, to fight the impact of rare diseases in lives.
Eurordis carries out activities to strengthen the groups of patients with rare diseases, claiming that rare diseases are considered a public health issue and raise public awareness and national and international institutions.
Among other purposes, Eurordis works to improve access to information, treatment, care and support for people with rare diseases, promote good practices in these fields, encourage scientific and clinical research in rare diseases, orphan drugs and treatments developed for rare diseases, and improve the quality of life through patient support, education and social welfare.
