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The mayor presented a motion to support the approval of the proposed action in the field of Rare Diseases (17/02/2014)

The Mayor of Totana, María Isabel Sánchez, has submitted a motion to the full February to urge the Spanish Government, and if the Ministries of Health, Social Services and Equality, Jobs & Education, in the scope of its powers, endow the year 2014, a work plan with activities, calendar, and responsible budget that meets the 14 priority actions outlined by the Spanish Federation for Rare Diseases (FEDER).

The proposal also calls urge the Government to support the promotion of international cooperation activities with Latin America through the Latin American Alliance for Rare Diseases and the declaration of 2019 as the European Year of Rare Diseases.

For this year 2014, and in order to contribute to improving the quality of life for people with rare diseases, the implementation of an action plan in the field of rare diseases that consist of 14 priority actions are proposed.

14 Actions for Action 2014

1.What rare diseases, with chronic and priority interest in public health diseases, have officially recognized a legal framework to ensure specific protection of health and social rights of people with a chronic disease caused by a rare disease or shortly frequent.

2.The ensure equitable access to vital drugs use for families with ER in the NHS, promoting concrete measures Orphan drugs, aids drugs and health products that guarantee access to any part of the territory, which does not are considered a threat to the sustainability of the health system, the economic criteria are not the only ones to be analyzed to justify their funding, stable funding mechanisms to ensure that authorization procedures are simplified articulate.

3.What Basic Common Portfolio SNS provide mandatory periodic reviews to it and that it expressly includes access to ER for people with the following features: The basic rehabilitation (physical therapy), Rehabilitation in patients with deficit Attention to functional and psychological health.

Also, the copayment drugs dispensed in outpatient and inpatient pharmacy is removed.

4.What Map Units Clinical Experience in ER, with the official route of referral mechanism is released, to ensure the effective transit (autonomic and interautómico) all persons with ER through the Spanish geography.

5.What new Centers, Reference Services and Units (CSUR) to ER in the National Health System in 2014 are credited, giving these units to ensure sufficient quality and sustainability funding.

Established in all regions Multidisciplinary Units Information, Monitoring, Control and General Care for People with ER, to meet a real and effective to those affected by ER, eliminating situations of inequality.

6.That a specific program for the care of people with undiagnosed long medical journey within the NHS and its implementation in all the Autonomous Communities impulse.

7.Que a protocol for the care of people in hospital emergency ER is developed.

And the development / dissemination of emergency clinical protocols in different pathologies and the DICE APER primary care protocol impulse.

8.What is believed by Ministerial Order on the National Registry of Rare Diseases and accelerate research in ER.

9.That the Spanish Government is involved in the EUROPLAN Conference to be held in June 2014, and implement all recommendations to improve the national strategy for ER through European indicators.

10.Que ensure care for people with ER requiring transfer to another Member State, where necessary, through the inclusion of requests for ERDF in transposing Directive Sanitary Border Mobility.

11.Que new scales for rating disabilities and publish a protocol for assessment of ER like in all the Autonomous Communities is established.

12.That the access of people with ER to formal education in all its forms is favored, enhancing the relevance of inclusion in mainstream schools through different forms of schooling, provision of technical and health resources, teacher training e increase in family-school collaboration, patient associations. "

13.The urgent measures to streamline procedures on Unit for people affected by ER established.

14.The ensure inclusion work by relaxing times, adapting working conditions and job location.

In addition to the 14 lines of action set out the implementation of cross-curricular initiatives in the field of international cooperation aimed at promoting international cooperation actions by the Spanish government with Latin American countries through the Alliance is to Rare Disease Iberoamericana.

It also advocates the support by the Spanish Government's statement in 2019 as the European Year of Rare Diseases

Source: Ayuntamiento de Totana

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