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The Mayor of Totana, José Martínez Andreo, together with the councilors of Health and Social Welfare, Trini Cayuela and John Carrion, and next to the president of the Association "D'Genes", Naca Pérez de Tudela, presented to the Minister of Health, María Ángeles Palacios, the agenda of the Second National Meeting on Rare Diseases (ER) to be held from 27 to 9 November at the Center for Lifelong Learning in Hemophilia "The Pond."
The meeting took place at the Health Department to publicize the program of activities and scientific papers are held throughout the weekend with the assistance of leading practitioners and researchers in the field of care.
This meeting, involving the second consecutive year at the national level patients, families and professionals involved in this type of pathology, will be held under the motto "United we normalize the situation that determines our social life", which aimed at educating Citizenship of the difficulties found these patients daily.
Perez de Tudela sought the help of volunteers and family and reiterated that this meeting aims to inform society of the existence of these conditions and the social and family represent, and the need for help and warmth that families need.
This theme underscores the importance of being united to work for a real social integration of people who suffer every day the consequences of a rare disease and socio consider the needs of those affected by ER, as stated by the president of D ' Genes.
The councilman of Social Welfare introduced the different activities that will start on Friday afternoon and conclude on Sunday morning, and the prestigious speakers who will address practitioners and researchers Genetics Service hospitals in the Arrixaca and Morales Meseguer and Sant Joan de Deu de Barcelona, among others.
The mayor thanked the board for D'Genes the work they are doing and that has allowed Totana become a regional landmark and national study and research of this type of disease and advocated raising the commitment of administrations to work towards the assistance of these people and their families.
II NATIONAL MEETING OF RARE DISEASES (ER)
II CONGRESS OF RARE DISEASES
Totana, 27, 28 and 29 November 2009
Continuing Education Center of Hemophilia (Private The Pond, Totana)
PROGRAM
FRIDAY 27:
17:30 h: Reception and accreditation of the Second Meeting of ER and II National Congress.
18:30 h: Welcome Ceremony.
The Importance of Associations in Rare Diseases: Presentation of the associations attending the Second Meeting of ER.
19:30 h: Hospital Morbidity by ER in the region of Murcia.
Speakers: Joaquín Palomar and Salvadora Titos Gil, Planning and Research Service of Health, Ministry of Health, Region of Murcia.
21 h: Dinner.
SATURDAY 28:
9 am: Breakfast.
10 h: Reception and accreditation of the Second National Congress of ER.
10:30 am: Opening of the II Congress of ER.
Speakers:
• Hon.
Mr. Regional Secretary for Social Policy, D.
Fernando Mateo Asensio.
• Ms. Director General of Health Care, Ministry of Health of the Autonomous Community of Murcia, Mrs. Pedrero Magina Blázquez.
• Mayor of Totana, D.
José Martínez Andreo.
• Ms. Director of the Spanish Federation for Rare Diseases (ERDF), Ms. Claudia Delgado.
• Genes D'Association President, Mrs. Naca Eulalia Perez de Tudela.
• Dr. Ms. Encarna Guillén, head of the Genetics Service Hospital Virgen de la Arrixaca.
• Murcia Regional President of Hemophilia Association, Dr. D.
Manuel Moreno.
From 11 am to 14 pm: Presentations at the Second Congress of ER (1 meeting):
• 11 h: Miotenofasciotomia selective ER closed.
Speaker: Dr. Igor Nazarov, Insmicort Institute.
• 11:30 pm: Assisted reproduction: genetic involvement in ER.
Reporter: Lorenzo Landeros Jose Gutierrez, a gynecologist - clinical director IVI Murcia.
• 12 h: Orphanet, the information portal of reference for ER and orphan drugs in Europe.
Speakers: Martin Arles Alba Soler and desert Couce, computer scientists documentary Orphanet Spain.
• 12:30 pm: Break.
• 13 h: Inflammatory bowel disease: definition, diagnosis and hospital management problems.
Speaker: Emilio Torrella Cortes, head of the Unit Crohn Morales Meseguer Hospital, and coordinator of GEMEII (Murciano Study Group of Inflammatory Bowel Disease).
• 13:30 pm: What is Fibromyalgia.
Speaker: Javier Hidalgo Tallon, MD - specialist pain management.
14 pm: Lunch.
From 16 to 18 pm: Break.
Optional: Visit to archaeological site of La Bastide.
19 ha 21:30 h.: Presentations at the Second Congress of ER (2 nd session):
• 19 h: The APTIC network, a joint initiative Oberta de Catalunya and University Hospital San Joan de Deu de Barcelona.
Speaker: Manuel Ruiz Armayones.
• 19:30 pm: Study of socio needs of those affected by ER.
Speaker: Antonio Bañón Hernández, member of Feder and president of the Association of glycogenosis.
• 20 h: A Guide for psychological support for ER.
Speaker: Claudia Delgado, director of Feder.
• 20:30 pm: Mobilization of affected people in 2010: All united against the ER.
Rapporteur: Maria Tome, head of communications Feder.
• 21 h: Living with ER.
Speakers: Elena Salamanca and Juan Jose Prieto Modero.
19 ha 21:30 h.: All children attending the second meeting held leisure activities and the workshop "History of Frederick: The 4-leaf clover."
21:30 h: Dinner.
SUNDAY 29:
9 am: Breakfast.
From 10 11 pm: Presentations from the Second Congress of ER (3 meeting):
• 10 pm: The Biomedical Research Center ER network.
Speaker: Francisco Martinez Palau, director of the Biomedical Institute of Valencia.
• 10:30 am: The current framework of the ER in Europe and Spain: BELIEVE.
Speaker: Miguel A.
Carabias Ruiz, director - manager of the State Reference Center for Care of Persons with ER and their families.
11 h: Closing of the Second Congress and the Second Meeting of ER.
Speakers:
• Ms. Alderman of Health of the City of Totana, Ms. Trinidad Cayuela.
• ERDF Delegate Murcia, Mr. D.
Juan Carrion Tudela.
• Genes D'Association President, Mrs. Naca Eulalia Perez de Tudela.
12 h 14 h: Guided tour to the historic area of the Shrine of the Holy and medieval village of Aledo.
14:30 pm: Farewell lunch.
Source: Ayuntamiento de Totana. Fotos: Totana.com
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