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EUROPLAN II Conference sets the way forward in the Spanish National Strategy for Rare Diseases

The main lines of action that must be followed to improve quality of life of people with rare diseases were discussed within the Conference

December 15, 2014

EUROPLAN II Conference was held 20 and 21 November in Madrid where the main lines of action that must be followed to further improve the people with rare diseases quality of life were presented to the Administration. After finishing the Conference, the Spanish Federation of Rare Diseases (FEDER), together with the representatives of European Organization of Rare Diseases (EURORDIS), transmitted these proposals to the competent authorities.

Paloma Casado, Deputy Director-General of Quality and Cohesion for Ministry of Health, Equality and Social Policy (MHESP), indicated the willingness for the MHESP to compile such initiatives within the framework of the National Strategy for Rare Diseases and collected requests and enhancements presented by the 10 working groups constituted by 140 people from different areas, public and private, related to these pathologies. Likewise, Sub-Directorate General for Quality and Cohesion of MHESP, committed to study and evaluate the Spanish position within the European Reference Network of Rare Diseases, as well as the creation of a State-level Coordinating Agency for Orphan Medicinal Products that will ensure the access for these treatments. Furthermore, Paloma Casado highlighted the need for an easy referral to Reference Centres, Services and Units to be provided among Regions without imposing extra cost for the Community receiving the patient. To reach this aim, different possible ways were assessed.

Working groups have been analyzing the ten priority issues in social, sanitary, educative and labour attention for three million people suffering from a rare disease in Spain through comparing the national situation with other European countries. As a result, good practices and lines of action that can be implemented in our country have been examinated.
This conference was supported by EURORDIS, which was present through its president, Terkel Andersen; Yann Le Cam, director of the organization; and Simona Bellagambi, EUROPLAN Adviser of EURORDIS.
 

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