Portal de Molina de Segura
www.portaldemolina.com
The V Regional Conference on Rare Diseases takes place in Molina de Segura on Friday, March 1, from 4.30 to 8.30 pm, in the Plenary Hall of the City Council, organized by the Spanish Federation of Rare Diseases (FEDER), the 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 today, Monday, February 19, in the Municipal Plenary Hall, by the Mayor of the town, Esther Clavero Mira, and the Delegate of FEDER in the Region of Murcia, David Sánchez González.
The program of the day includes the following activities:
16.30 h .: reception and accreditation.
5:00 pm: opening table.
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 and the FEDER Foundation, Juan Carrión Tudela, and the Managing Director of Molina Hospital, Pedro, attend. Hernández Jiménez.
5.30 pm: Inaugural paper on Research in Rare Diseases: Challenges in the 21st Century, by the Scientific Director of the Center for Biomedical Research in the Network of Rare Diseases (CIBERER), Pablo Daniel Lapunzina.
Presented by the Director of the Center for Biochemistry and Clinical Genetics of the Hospital Universitario Virgen de la Arrixaca, Isabel López Expósito.
18.15 h .: Pause.
6.30 pm: Presentation on European Reference Networks: Challenges and Opportunities, by the President of FEDER and the FEDER Foundation, Juan Carrión Tudela.
Presents the doctor and technician responsible for training the SMS, Integral Plan for Rare Diseases of the Region of Murcia, José Francisco Castañón Baquera.
7:00 pm: Presentation on Evaluation and Monitoring of Muscular Dystrophy in Emery-Dreifuss Syndrome by thermography, by Alessio Cabizosu, from the Hospital de Molina Research Chair at the UCAM.
Presents the Managing Director of the Hospital de Molina, Pedro Hernández Jiménez.
7.30 pm: Experiences table on 20 years of Rare Diseases.
Presented by: David Sánchez González, Delegate of FEDER-Murcia.
Participants: Rosario Domingo Jiménez, Neuropediatra, researcher associated with the Murcian Institute of Biosanitary Research Virgen de la Arrixaca;
Encarna Guillén Navarro, Head of the Section of Medical Genetics of the Pediatric Service of the Virgen de la Arrixaca University Clinical Hospital, and member of the Center for Biomedical Research in the Network of Rare Diseases (CIBERER);
Daniel Martínez Riquelme, President of the Molinense Association of Rare Diseases (AMER);
and Juan José Cánovas Cánovas, First Deputy Mayor of the Sotana City Council.
20:15 h .: closing.
Registration must be made at the Department of Sports and Health, at the telephone number 968 38 85 20, Monday through Friday, from 08:00 to 15:00 hours, and at the FEDER-Murcia Delegation, at the telephone number 968 42 02 87 , from Monday to Friday, from 9 a.m. to 1 p.m.
Registration is mandatory and free for all attendees to the day, and includes documentation and attendance diploma.
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 8th Solidarity Race for Hope, which will take place on Sunday, February 24, 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 1:00 pm.
At 10.30 am, in the same place, zumba session.
Source: Ayuntamiento de Molina de Segura
Privacy policy
- Legal notice
- Cookies