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The four municipal groups support in a joint motion claims raised by ERDF (09/02/2016)

The four local political groups will file a joint motion at the next regular full February urging the Full Council of Totana to support the demands made by FEDER for World Rare Disease Day 2016 was celebrated on February 29 .

In this regard, it urges the Ministry of Health of the Region of Murcia and the Ministry of Health, Social Services and Equality to implement the actions of regional and national levels that are specific to their responsibilities and which are reflected in the consensus of the manifesto institutional attachment.

The demands, contained in a Decalogue that is included in an institutional manifesto, intended to promote a development plan and implementation of the Rare Diseases Strategy of the National Health System providing it with sufficient resources and ensuring coordination between the different regions.

In addition, it calls for ensuring the sustainability of the National Register of ER, involving the CCAA, professionals, researchers, as well as other health workers in the dump data;

and promote research into rare diseases, favoring the viability and sustainability of the entities and institutions who do research in rare diseases.

Similarly, we want to promote training and information Rare Diseases;

and strengthen the appointment of the Centres, Services and Units Reference (CSUR), providing resources, encouraging coordination between CSUR and other healthcare facilities, as well as promoting their participation in the call for the European Reference Networks (ERNs).

FEDER works to implement a model of Integral Assistance to respond to the needs of people with rare diseases, ensuring early diagnosis and harmonization of an expanded screening in all the Autonomous Communities.

Other demands is to achieve rapid and equitable access to diagnosis and treatment with appropriate drugs in the different autonomous communities, unifying the reports and assessments and avoiding delays in decisions on financing and drug prices.

It aims to promote participation in employment of people with rare diseases with actions that enable them to perform their work and professional activity and promote inclusive education, with the involvement and training of all professionals in education.

It also wants to strengthen social services, especially those related to the attention to disability and dependence, as well as coordination of social services, health, education and employment both in the state and in the CCAA.

Rare diseases, also called rare or minority diseases are those that have a low prevalence.

The European Union provides a rare disease affects less than 5 per 10,000 people.

The World Health Organization estimates there are 7-000 pathologies of this type, affecting 7% of the population.

Rare diseases are mostly chronic and degenerative.

In fact, 65% of these diseases are severe and disabling and are characterized by having an early start in life: 2 out of 3 appear before two years.

Source: Ayuntamiento de Totana

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UNE-EN ISO 9001:2000 - ER-0131/2006 Región de Murcia
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