Portal de Totana
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The fifth edition of the "V Jornadas Affected Andersen for hemophilia with inhibitors", organized by the Regional Association of Hemophilia Murcia, were closed yesterday afternoon with the participation of children, youth and 15 families, a total of 44 people from many locations Spain and in the presence of local and regional authorities.
The closing ceremony of the camp, held at the Center for Continuing Education Day and Hemophilia and has developed over four days, from 6 until 10 July, was attended by Mayor of Totana, José Martínez Andreo The Director General of People with Disabilities, Marisol Morente, general director of Health Care Service Health Murciano, Blázquez Magina Pedrero, the manager of the Hospital Universitario Virgen de la Arrixaca, Manuel Alcaraz Quiñonero, national president of the Spanish Federation Hemophilia, Antonio Muñoz Puche and President of the Murcia Regional Hemophilia Association, Dr. Manuel Moreno Moreno.
The ceremony was also attended by the professor of hematology Arrixaca, José María Moraleda, Councillor for Health, Trini Cayuela, and the president of FAMDIF, Carmen Gil.
One year, the event consisted in a camp designed for families, children, adults and young people affected by hemophilia with inhibitor, which sought to promote self-care, addressing psychosocial issues and medical issues and personal experiences living and exchange between and other affected families, attending the conference.
Attendees, who were accompanied by their parents, they have learned during these days in various technical seminars care and control of the disease to improve their quality of life, and prevention of bleeding and arthropathy, and have known inhibitor therapy.
Totana Mayor acknowledged the work of Dr. Moreno and his team to pass on to the Administration as "sensitivity and enthusiasm" for this disease, and secured the cooperation of the Consistory totanero in activities that promote the Centre, hereinafter the same way as has done so far, with the aim of improving the quality of life of these people and their families.
Thus, recalled that the Consistory has since 1989 working with this partnership and with this center, which he defined as "a center of hope and life."
In the same vein, he highlighted the work that has been developing this partnership and in particular, Dr. Moreno, for the world of hemophilia and requested him to continue with the same "enthusiasm and excitement," welcoming all Totana attendees, while inviting them to know "more about" this county.
He also had words of congratulations to Antonio Muñoz Puche, who was recently appointed as national president of the Spanish Federation of Hemophilia.
For his part, Manuel Moreno gave a brief historical overview to the evolution of this disease by ensuring that health care in the region, and the Hospital Virgen de la Arrixaca were more pointers when it comes to treatment of hemophilia is concerned.
For its part, the director general of People with Disabilities and FAMDIF president, agreed to claim that we must "continue to fight for full normalization and integration of persons with disabilities."
Source: Ayuntamiento de Totana. Fotos: Totana.com
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