Portal de Totana
www.portaldetotana.com
The town of Totana has joined the events organized by local "D'Genes" to commemorate the World Day for Rare Diseases, held on Sunday 28 February, reading the manifesto, through which has requested an urgent and immediate action can be accomplished only with an agreement between all the people who are part of this society.
Before reading the manifesto, the president of the association, Naca Pérez de Tudela, explained that the overall objectives of the campaign is to raise funds for social projects and services for families with ER, the ER visibility in media, the ER position on the political agenda.
In this line, urging the administration to push Centres, Services and Reference, position the brand ERDF.
Exploitation of the same concept of rare diseases and position it as ERDF and community cohesion Rare Diseases through mobilization.
The president of "D'Genes" has thanked all the support shown the corporation since the beginning of his career and the solidarity shown by all totaneros that in one way or another have worked with their support in making more visible every day needs of this group.
Also, Perez de Tudela appealed to all those people, who suffer a rare disease or not, to reach out to the association to know which are the projects that are initiated and benefit many families.
In this regard, he recalled that more than 80,000 families have lost their way in your working life, social and family because their house is a rare person, "we should help them."
Gene D'requested a commitment that drives a global strategy to allow true integration health, social, educational and employment, ensure equity, justice and solidarity they deserve all children, youth and adults affected by ER, and ensure access conditions of equality in the diagnosis, treatment and rehabilitation, no matter how rare it is our disease, or where we live.
For its part, the mayor of Health, Trini Cayuela, explained that through this act the city of Totana wants to show its total commitment to the World Day for Rare Diseases and attests to the commitment and endorsed by the plenary of the Corporation and Consistory totanero makes one of the most sensitive government and protest the issue of rare diseases.
Events to commemorate the day of Rare Diseases continue tomorrow, Friday 26 February that there will be a debate on "ER debate.
Future prospects ", in which participating physicians, policy makers, journalists, patients and relatives, and Saturday 27 February, the charity dinner held at the restaurant Venta La Rata.
Finally, on Sunday 28 February, Day ER, Murcia, and representatives of ERDF D'Genes involved in the race for life in Madrid, and Saturday 6 and Sunday 7 March, a pilgrimage to the jubilee year of Caravaca Cross 2010.
Source: Ayuntamiento de Totana. Fotos: Totana.com
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