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Totana host from 24 to 26 October, the "First National Conference on Rare Diseases " (15/10/2008)

Totana host, from 24 to 26 October, the First National Conference on Rare Diseases, the first involving patients, families and professionals involved in this type of pathology.

The presentation of the poster for this meeting was held recently at a press conference in the capital of Murcia, which included the presence of Naca Perez, president of the Association D'Genes, event organizer, the director general of People Disabled, Marisol Morente, and the representative in the region of the Spanish Federation for Rare Diseases (ERDF), Juan Carrión.

This meeting, held in the center of Continuing Education in Haemophilia The Pond under the motto "United we normalize the situation that determines our social life" is intended to sensitize the public of the difficulties that these patients are daily , explained Naca Pérez de Tudela.

This theme highlights the importance of being united to work for a real social integration of people who suffer every day the consequences of a rare disease, as expressed Naca.

Similarly, Marisol Morente stressed the importance of this association, as a regional reference in Murcia, with the work done "by and for people with rare diseases."

The meeting will begin on 24 with the reception of the attendees, will be held on Saturday 25 papers and panels of experts, workshops for patients and their families, and discussions of testimony, and on 26 will take place the closing ceremony, he said.

The president of D'Genes highlighted mainly the objectives to be achieved with this meeting, which is to create a space of coexistence between people who are diagnosed with rare diseases, families and professionals.

For its part, the representative in the region of the Spanish Federation for Rare Diseases (ERDF), Juan Carrion, highlighted the professional wealth of this meeting, which involved, among others, Salvador Martinez of the Neuroscience Institute of Alicante, Carlos Casas, Head of Child Neurology of the Arrixaca, and Encarna Guillén, head of the Unit of Medical Genetics, Hospital Virgen de la Arrixaca, "explaining the context of these diseases in the Region", he added.

Carrion also noted the presence of Pilar Giraldo, of the Department of Inherited Metabolic Diseases (CIBERER) and Manuel Posada, Research Institute for Rare Diseases of the Health Institute Carlos III, who explained in the closing conference of the projects that are developed European level for this type of pathology.

He noted that the meeting was also responsible for ERDF attend lecture on the experiences developed in other regions, and highlighted the case of Extremadura and Andalusia, where there are specific plans for these pathologies.

In this regard, he announced that from ERDF to be started within the framework of this meeting, a campaign to collect a specific job needs and rights for people with rare disease.

This work will start in this event and will be borne by the company Intersocietal, which works directly with Feder.

That is why, in the context of this conference, the Spanish Federation for Rare Diseases begin to develop the first Declaration of Rights of People Affected by Rare Disorders.

This document, which aims to be the speaker of the affected, will have its starting point in this meeting and will be further developed during the annual campaign to raise awareness of ERDF.

Among the demands that these groups made to the government, Perez said the support for research, the allocation of resources to patients to improve their quality of life, as early care and psychological care as well as family support, and that "can not find direct solutions as treatments or medication."

JOURNAL OF THE NATIONAL MEETING PROGRAM:

FRIDAY, OCTOBER 24

16.00 - 20.00 Arrival, Accommodation and Reception of the participants.

20.30 Opening of the local office of the Association for Rare Diseases and other PDDs D'Genes located on Narrow Street s / n.

21.00 Dinner.

22.00 Awareness Activities (dynamic display).

SATURDAY, OCTOBER 25

9.00 Breakfast and arrival of participants.

10.00 Opening of meeting by the authorities.

· José Martínez Andreo.

Mayor of Totana.

· Trinidad Cayuela.

Councilman Health.

Ayto Totana.

· Fernando Mateo Asensio.

Regional Secretary for Social Policy.

· Juan Manuel Ruiz Ros.

Regional Secretary for Citizen Services, Health and Drogodepencia Ordinance.

· Marisol Morente.

Director General of Disability.

IMAS.

· Joaquín Barberá Blesa.

CERMI President of Murcia.

· Rosa Sanchez de Vega Garcia.

President of ERDF.

Vice EURORDIS.

· Victor Orriaga.

Director Isabel Gemio Foundation for Research of muscular dystrophy and other rare diseases.

· Manuel Moreno Moreno.

President Regional Association of Hemophilia.

Real Fundación Victoria Eugenia president.

Physician Assistant Hematology Service of Hospital Universitario Virgen de la Arrixaca.

· Naca Eulalia Perez de Tudela Cánovas.

Rare Diseases Association President and other PDD "D'Genes" Totana.

10.30 (Plenary Session) Bench: Experiences of Care for Rare Diseases in autonomous regions.

· Salvador Martínez.

Professor of Human Anatomy and Experimental Embryology.

Neuroscience Institute of Alicante.

· Encarna Guillén.

Head of the Unit of Medical Genetics, Hospital Universitario Virgen de la Arrixaca.

President of the Society of Clinical Genetics and Dysmorphology of the ASP.

· Pilar Giraldo.

Haematology Department of Hospital Universitario Miguel Servet, Instituto Aragonés Health Sciences.

Member for CIBERER (Area of Inherited Metabolic Diseases)

· Moderator: Juan Carrion Tudela.

Technical Coordinator D'Genes.

12.30 Coffee Break.

13.00 (Plenary Session) Bench: Experiences of association and action

social with rare diseases.

· Rosario Fernandez.

Communications Officer and Delegate of the Spanish Andalusia porphyria.

Member of the Steering Group of the Andalusian Plan for Patients with ER.

· Silvia Castro García.

Director of Cystic Fibrosis Association of Andalusia.

· Mauro Rosatti.

President of the Association San Filippo.

President of the Association Barreres Sense.

· Javier Romero.

Vice Barreres Sense.

Member of Valencia Rett syndrome.

· Moderator: Pedro José Tudela.

Technical Coordinator D'Genes.

14:30 Lunch.

17.00 Start of the Workshops:

-Workshop 1: The importance of caregivers in the care affected by rare diseases.

· Gabriela Perez.

ERDF expert psychologist Valencia.

"Workshop 2: coping and acceptance of the situation resulting from the rare disease.

· José Antonio Romero Canovas.

Social worker and family counselor.

Early Care Center Totana.

· M ª Carmen Jordan Jimeno.

Psychologist Early Childhood Center in Totana.

"Workshop 3: Physiotherapy techniques adapted to the rehabilitation of people with rare diseases.

· Innocence Casanova Cánovas.

Physiotherapist.

Early Care Center Totana.

· Mary Eugenia Martín Suquia.

Technical Director of the Association for Autism and other Pervasive Developmental Disorders (Astrada) of Murcia.

· Ascension Cobo Najar.

Chief Physiotherapist and Medical Center Santa Eulalia.

• Coordinates: Natalia Latorre.

Technical Director D'Genes.

18.30 Coffee break.

19.00 Continuation and conclusion of the workshops.

20.00 Plenary Session.

Testimonies: Living with a Rare Disease. "

· Mary Monserrate Martinez.

Representative X - Fragile Murcia.

· Pilar Castaño.

Foundation President 5p.

· Enrique Nieto Nadal.

Member of the Association of Retinitis Affected.

· Vitoriano Patricia Simón Rodríguez and Simón Rodríguez.

Murcia.

Moderator: Gabriel Serrano.

Board Member D'Genes.

21.30 Dinner.

22.30 Evening activities.

Dynamic assessment of the meeting.

SUNDAY OCTOBER 26

9.00 Breakfast

10.00 Closing of the First National Meeting Professionals, Parents and People

Affected by rare diseases.

· Rosa Sanchez de Vega Garcia.

President of ERDF.

Vice EURORDIS.

· Naca Eulalia Perez de Tudela Cánovas.

Rare Diseases Association President and other PDD "D'Genes" Totana.

10.30 Visit the natural park of Sierra Espuña: Ermita de Santa Eulalia Villa

Medieval Aledo.

14.00 Lunch at Hotel Monasterio Santa Eulalia.

16.00 Departure of participants and End of meeting

Source: Asociación D´Genes

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