Portal de Totana

www.portaldetotana.com

Totana - SpanishTotana - English
detail of Totana

 

The value of partnering arrives tomorrow to Murcia with the presentation of "FEDER, the strength of associations" (25/02/2016)

The meeting will be chaired by Encarnacion Guillen, Minister of Health of the Autonomous Community of Murcia, Juan José Canovas, Mayor of the town

Along with Juan Carrion, President of the organization and co-author of this work, will also be involved Antonio M. Bañón and Enrique Pastor, also authors of the work with Luján Echandi

The Spanish Federation for Rare Diseases presents the book 'ERDF, the strength of the associations' Totana morning at a meeting chaired by Encarnacion Guillen, Minister of Health of the Autonomous Community of Murcia, Juan José Canovas, Mayor of the town.

Through this work it seeks to move the importance and "the value of partnering as the main tool for citizen participation in the political enclave and social reality at hand," says Juan Carrion, President of ERDF and co-author of this book.

Along with him, the meeting will also be attended by Antonio M. Bañón and Enrique Pastor, also authors of the work with Luján Echandi.

Through a historical analysis of the associations of patients in Spain, "this book demonstrates how Rare Diseases (ER) have gone from being virtually unknown to get a pop group presence in our society," he qualifies Carrión.

Specifically, if it is true that tradition by associations in Spain has been poor, according to a report Farmaindustria in 2009, ER occupied a prominent place, namely 7.1% of patient associations.

Growth of associations

The birth of ERDF has encouraged this growth not only in Spain but also in Europe.

A good example of this increase is that the Federation was formed in 1999 through the union of seven states.

"We can not forget that complications of partnership we add the geographic dispersion of the ER" said Carrion.

However, today, "ERDF represents around 300 associations, representing a more than significant in these sixteen years of work increase."

All this, "it would have been impossible without a set and such a strong and extraordinary as the disease prevalence low labor movement;

a movement that has managed to promote research projects, awareness and visibility, among many others. "

This development, based on political action and a model of collaborative work between all those involved, has made possible the recognition of ERDF by institutions, socio-sanitary platforms, associations and above all patients, " the cornerstone that drives us every day to remain the principal and sole interlocutor with the government, "said Carrion.

partnerships

The evolution of associations has also been influenced by the jump that gave the Federation internationally, twinning with organizations such as EURORDIS (European Organisation for Rare Diseases) or Aliber (Latin American Alliance for Rare Diseases).

Thus it is achieved greater impact beyond our borders, enabling the exchange of best practices and "defending together one message and one voice: that of patients with ER," says the President of FEDER.

Therefore, 'ERDF strength of associations' get' realize our thanks to all who have made possible all that we have acquired.

An appreciation for the constant and tireless work of those who have placed their trust in us and have succeeded in making the geographic dispersion in a solid network of work "in the words of Juan Carrión.

Source: FEDER

Notice
UNE-EN ISO 9001:2000 - ER-0131/2006 Región de Murcia
© 2024 Alamo Networks S.L. - C/Alamo 8, 30850 Totana (Murcia) Privacy policy - Legal notice - Cookies
Utilizamos cookies propias y de terceros para facilitar su navegación en la página web, conocer cómo interactúas con nosotros y recopilar datos estadísticos. Por favor, lee nuestra Política de Cookies para conocer con mayor detalle las cookies que usamos, su finalidad y como poder configurarlas o rechazarlas, si así lo considera.