miércoles, 13 de junio de 2018

ECRD 2018 Opening & Plenary Session

- Welcome address and opening remarks: 00:00 - Keynote addresses: 28:40 - Plenary welcome & introduction: 01:08:27 - Inspirational speaker, Dr Rüdiger Krech, Director, Universal Health Coverage and Health Systems Office of the Assistant Director-General, World Health Organization: 01:14:43 - Patient testimony, Maria Prähofer, living with MPS IVA, Morbus Morquio: 01:23:40 - Daniela Bas, Director, Division for Social Policy and Development Department of Economic and Social Aff airs, United Nations: 01:32:13 - Rare disease patients’ needs and goals, Lene Jensen, Chief Executive Officer, Rare Diseases Denmark: 01:37:39 - Rare disease policy priorities for the future panel discussion: 02:01:05

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