Portal de Totana
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Totana host 21 to October 23 the IV National Congress of Rare Diseases (ER) in which researchers and clinicians from hospitals in Spain will present new clinical cases and experimental therapeutic approaches and address the scientific challenges of the future with these pathologies.
The Mayor of Totana, Isabel Maria Sanchez, and the president of the Association "D'Genes" Totana, attached to the Spanish Federation for Rare Diseases, Eulalia Perez de Tudela Naca, presented the program of events to be held at the Center Continuing Education in Haemophilia "The Pond" in this town.
The National Meeting of ER begin on Friday, day 21, with several workshops for relaxation, hydrotherapy and laugh and a round table on the testimony of living with an ER by presidents and mothers of patients with diseases or diagnostic process.
The official opening of Congress shall be borne by the authorities and will be attended by the director of the State Reference Center ER de Burgos, Miguel A.
Carabias Ruiz, dean of the Faculty of Medicine, University of Murcia, Joaquin Maria Lopez Garcia-Tin, the School of Social Work, Henry Shepherd, president of the Spanish Federation of ER (ERDF), Isabel Calvo, and Association president Gene D', respectively.
During the conference will address issues such as the use of medical acupuncture in the rehabilitation of EF, the scientific and clinical experience in ER and different clinical cases, new scientific challenges around the fragile X syndrome, experimental therapeutic approaches, the ER from dental point of view, the psychosocial impact of these conditions and legal and institutional framework.
In addition, other issues will be addressed as the importance of respite care for families with ER, chest physiotherapy and mechanical ventilation, in the treatment of equine patients, mobilization of patients and families with an ER to achieve social change in Spain.
The program, which have already signed up 190 people, including a day of coexistence of professionals, families and people diagnosed with ER.
The mayor thanked the board of D'Genes have been doing the work that has allowed Totana become a regional landmark national study and research of this type of pathology.
It has also advocated raising the government's commitment to work towards the assistance of these individuals and their families, and stressed the need for concerted efforts to search for resources that impact on improving the quality of life and care of patients and their families.
Sanchez has expressed his satisfaction at being able to collaborate from the administration in organizing the event and to help these families who are really suffering from this problem, 365 days a year.
In this regard, he congratulated the President of the Association and all its board by "the desire, effort and enthusiasm" inverted when organizing an event of this kind, a reference mark at the regional, national and international levels.
Sanchez Ruiz is committed to continue contributing to the initiatives presented by the association and take actions that contribute to improving the quality and life expectancy of patients and their families, appealing to the investment of study and research of this type of diseases that affect more than 85,000 Murcia.
However, he recalled that the Corporation has approved several motions Local to implement a comprehensive care plan rare diseases within the Health Plan of the Autonomous Region of Murcia and Medical Genetics Unit of reference in the Hospital Virgen de the Arrixaca of Murcia.
Also supported the creation of a Specific Record for Rare Disorders, which identifies the affected population in the region and the establishment of a Regional Commission for the preparation of comprehensive care plan for rare diseases composed of the members listed above and the commitment to yield a plot to build a referral center study of these diseases in Totana.
Source: Ayuntamiento. Fotos: Totana.com / Video: Totana.TV
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