Portal de Molina de Segura
www.portaldemolina.com
The IV Regional Conference on Rare Diseases takes place in Molina de Segura on Saturday, February 24, from 9 a.m. to 2:00 p.m., at the Virginia Martínez Fernández Auditorium (at the MUDEM), organized by the Spanish Federation of Rare Diseases (FEDER), City of Molina de Segura and the Hospital de Molina, with the collaboration of the Murciano Health Service and the Medical Studies Foundation of Molina de Segura (FEM).
The event was presented at a press conference on Monday, February 19, by the Mayor of Molina de Segura, Esther Clavero Mira, the President of FEDER, Juan Carrión Tudela, the Deputy Director of Molina Hospital, Francisco Menchón Galiana, the Councilor of Public Health, Esther Sánchez Rodríguez, and the Delegate of FEDER in the Region of Murcia, David Sánchez González.
The program of the day includes the following activities:
09.00 h .: reception and accreditation.
09.30 h .: table 1 on Innovative experiences of the associative movement in Rare Diseases.
Moderator: David Sánchez González, Delegate of FEDER-Murcia.
Association of Rare Diseases D'Genes: Presentation First X-Fragile Educational Guide.
Speaker: Encarna Bañón Hernández, Psychologist and technical coordinator of the D'Genes Association.
Association of affected Retina of the Region of Murcia (RETIMUR): Here we have it in mind.
Speaker: Joaquín P. Sánchez Onteniente, Head of Section of low vision and rehabilitation of the University Clinic of Integral Vision of the University of Murcia.
Association of relatives and people affected by Lipodystrophies (AELIP): Visibility of the Diagnosis and Treatment Guide for Lipodystrophies.
Speaker: Naca Eulalia Pérez de Tudela, President of AELIP.
Soldiers of AINARA: documentary screening A fight against time.
Presented by: Ana Vanesa Gómez Pérez, Psychologist of Soldiers of AINARA.
10.30 am: inaugural table.
Participants: the Mayor of Molina de Segura, Esther Clavero Mira, the Regional Minister of Health of the Region of Murcia, Manuel Villegas García, the President of FEDER, Juan Carrión Tudela, the Managing Director of the Molina Hospital, Dr. Pedro Hernández Jiménez, the Councilor for Public Health, Esther Sánchez Rodríguez, and the Delegate of FEDER in the Region of Murcia, David Sánchez González.
11.00 h .: Pause.
11.30 am: presentation on the importance of multidisciplinary neurological rehabilitation.
Moderator: Dr. Pedro Hernández Jiménez, Managing Director of Hospital de Molina.
Speaker: Vanessa Carrión Téllez, occupational therapist at the Hospital de Molina and Fundación Casa Verde.
12:00 noon: table 2 on More than patients: brush strokes to promote a more active and responsible role.
Moderator: Dr. Pedro Hernández Jiménez, Managing Director of Hospital de Molina.
The importance of the patient in the Rare Diseases.
Speaker: Fidela Mirón Torrente, Vice-president of FEDER.
Comprehensive Plan for Rare Diseases.
Speaker: María Teresa Martínez Ros, General Director of Planning, Research, Pharmacy, and Citizen Services of the Region of Murcia.
Translational Research on Rare Diseases.
Speaker: Dr. Encarna Guillén Navarro, Head of the Medical Genetics Section of the Pediatric Service of the Virgen de la Arrixaca University Clinical Hospital, and Head of the ERIA IMIB-ARRIXACA CIBERER ISCIII Research Group.
13.00 h .: table 3 on Improving the quality of life of patients: specialized services.
Moderator: José Rubén Martínez Egea, Coordinator of Physical Activity and Health of AFESMO.
Early care and rare diseases.
Speaker: Julio Pérez López, Professor at the Department of Evolutionary Psychology and Education at the University of Murcia.
Intervention in the aquatic environment from physiotherapy and physical education.
Speakers: Guadalupe Álvarez Rodríguez, physiotherapist of the D'GENES Association;
and Manuel Vicente Móndejar, Responsible for Adapted Sports of the Molina de Segura City Council.
2:00 pm: closing.
The inscriptions must be made in: www.molinadesegura.es, or in Technical Secretariat (Department of Sports and Health, in the telephone number 968 38 85 20, from Monday to Friday, from 8:00 a.m. to 3:00 p.m.).
Registration is mandatory and free for all attendees to the day, and includes breakfast, documentation of the day, attendance diploma, and family respite service.
On the other hand, on the occasion of the World Day of Rare Diseases, the City of Molina de Segura, the Hospital de Molina, and the Spanish Federation of Rare Diseases (FEDER), with the collaboration of other entities, have organized the 7th Solidarity Race for Hope, which will take place on Sunday, February 25, with departure in the Plaza de España, at 11.30 am, on a circuit 500 meters, in the Park of the Company, for one hour.
Voluntary financial donation in favor of FEDER.
Free registration, from one hour before departure, and lottery of numerous gifts.
At 10.30 am, in the same place, zumba session and popular games.
Source: Ayuntamiento de Molina de Segura
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