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Genes and ERDF reward Campos del Río for its involvement, interest, struggle and initiative to make the reality of rare diseases visible (20/02/2017)

On the night of Saturday 18, at the annual charity gala organized by D'Genes and FEDER, Campos del Rio was awarded for its work of involvement, interest, struggle and initiative to make visible the reality of rare diseases in the town.

The mayor of the municipality was accompanied by the first deputy mayor, Antonia López, who shared the evening with the rest of the winners, organizers, directors of the delegation of D'Genes in Campos del Rio, users and attending public.

The evening with a total capacity of 400 people, was attended by, among others, the president of D'Genes, Juan Carrión;

The mayor of Totana, Juan José Cánovas;

The Minister of Education, María Isabel Sánchez-Mora;

The director general of Educational Innovation and Attention to Diversity, Ana Millán Jiménez;

The Director General of Human Resources of the Murciano Health Service, Pablo Alarcón Sabater;

And the first ediles of Campos del Río, María José Pérez Cerón;

Molina de Segura, Esther Clavero;

And Aledo, Juan José Andreo ..

Likewise, the delegate of the Spanish Federation of Rare Diseases in Murcia (FEDER), David Sánchez;

A representative of the board of directors of the non-governmental alliance of EURORDIS patient organizations, Gema Chicano;

And representatives of different associations of rare diseases.

The manager of the Hospital de Molina de Segura, Pedro Hernández Jiménez, received the award for Labor Medica, while the City of Campos del Rio received the award to the public institution for its unconditional support in all activities of promotion and visibility of the Rare diseases that are organized in that municipality.

The first mayor of Campos del Rio, María José Pérez Cerón, was in charge of taking the stage to collect on behalf of all camperas and camperos this important recognition.

Pérez Cerón dedicated a few words of gratitude for the award of this award and highlighted the great work developed by the great family of D'Genes, FEDER and AELIT that he described as "immense that you develop in our town and in each one of the families that Need your support.

You make us very happy with this concession.

Thanks once again to Ana María, Maruja Hurtado and Encarna responsible for D'Genes in Campos del Río ".

The first edil jacket took advantage of his speech to make a call to "rare diseases more than ever should be supported by research.

Supports are more necessary than ever for this purpose.

Do not faint in your important daily work and do not forget that in Campos del Rio you will always have a space for all of you. "The mayor concluded by thanking President Juan Carrión Tudela, Naca Pérez de Tudela, Celia Carrión Pérez de Tudela and the entire family D 'Genes that have worked tirelessly for years to make rare diseases visible in our society.

The prize for Solidarity was for Guillermo Nevado Cabrera, a person who in private title has been collaborating with D'Genes for two years showing the value of individual involvement.

In the category of Volunteering and Social Promotion was awarded the young Carlos Montserrat, D'Genes volunteer since 2010, while the Social Work was awarded to Gessine Hernann who makes contributions to D'Genes through his craft work of making scarves And caps.

The recognition of the Institutional Support was granted to the Municipality of Molina de Segura, while the Solidarity Professional was given to the psychologist Natalia Segura, who is part of the professional team of D'Genes attending programs such as pediatric palliative care or therapy friendship.

The Club Simao group of Cehegín, for the solidarity march for the benefit of D'Genes that organize every year, and Los Gauchos de Totana, for collaborating with the association among other issues participating in the Inocente gala, shared the Social Collaboration award.

For her part, the president of the ADIBI Association and vice president of the Spanish Federation of Rare Diseases (FEDER), Fide Miron, collected the prize for the Family courage, for being an example of strength and for being a person without barriers and who A whole life lesson.

The prize for the Pharmaceutical Industry was given to Janssen, who has supported D'Genes to make possible the I Worker Meeting specialized in rare diseases and to support the IX International Congress of Rare Diseases.

The award for Communication was for the publication Health 21, a newspaper specialized in health issues and that gives wide coverage and contributes to the dissemination of news of interest for rare diseases.

Finally, the Special Prize 2017 was given to Pilar Bernal Jiménez, whose generosity and that of his children to give up a place in Murcia will make it possible that soon there will be in the said municipality with a national reference center of comprehensive care for people with Fragile X And other rare diseases.

The President of D'Genes stressed that the awardees embodied the good work and support to the collective of people living with a low prevalence pathology and appealed to everyone's collaboration to ensure that each day the present and the future of those affected by Rare diseases is a little better.

In this regard, he insisted on the importance of research.

Source: Ayuntamiento de Campos del Río

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