Multidisciplinary approach in the management of PWS – programul conferintei

Posted: April 14, 2009 by mihaiela in conferinte, Evenimente APWR
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Prima conferinţă est-europeană:

Multidisciplinary approach in the management of PWS


Comitet organizatoric

Dorica Dan, presedinte
Christel Nourissier
Maria Puiu
Ioana Rotaru

Comitet ştiinţific

Maria Puiu, presedinte Dorica Dan
Christel Nourissier Sussane Blichfeldt
Victor Pop Hubert Soyer
Natalia Cucu Corin Badiu
Margit Şerban Valerica Belengeanu
Aurelia Szekeley Mihai Gafencu
Ruxandra Răşcanu Emilia Severin
Calin Popoiu Cristina Rusu
Norbert Hoedebeck-Stuntebeck Gabriela Anton

GENERAL PROGRAM

24th of April 2009

08.30- 09.00 REGISTRATION
09.30-10.00 OPPENING OF THE CONFERENCE

Expected speakers from Ministry of Health, University of Medicine and Pharmacy Timisoara, APWR, APL;
.
10.00-10.30 COFEE BREAK, POSTER VIEWING

10.30-13.00 PLENARY SESSION
Diagnosticul si managementul SPW –Modele Europene/ Co- chairs: FRAMBU + PW No (Norwegian experience)

10.30- 10.50 Approach of PWS in Norway – Ragnhild Arnesen, parent delegate IPWSO

10.50- 11.10 FRAMBU example at European level – Dr. Kaja Giltvedt

11.10 -11.30 NoRo Project “Norwegian – Romanian partnership for the progress in rare diseases”- Psychologist Dorica Dan, President of APWR/ ANBRaRo / Launching OF the project

11.30 – 11.50 PWS patients’ expectations at European level regarding the diagnosis and healthcare services- Christel Nourissier, Secretary of General EURORDIS

11.50 – 12.10 Project: Correlation of clinical, genetics and epigenetics aspects for understanding the etiology Prader Willi/Angelman syndromes – a model of interdisciplinary approach of rare diseases in Romania- coordinator Prof. Dr. Maria Puiu

12.10 – 13.00 HEALTH STATE IN PWS (CHILDREN)- Prof. Dr. Susanne Blichfeldt

13.00-14.00 LUNCH
14.00-15.45 PLENARY SESSION

14:00-15.00 EXCHANGES OF GOOD PRACTICES –Guidelines and standards of care in PWS. Presentation of the results of the First Caretakers Conference from Herne, Germany- Psychologist Norbert Hoedebeck-Stuntebeck and Psychologist Hubert Soyer

15.00 – 15.20 Elements of diagnosis and clinical follow-up in PWS – Assoc. Prof. Dr. Otilia Marginean, UMF Timisoara

15.20 – 15.40 Orthopedic and surgical approach in PWS patients- Assist. Prof. Dr. Calin Popoiu, UMF Timisoara

15.40 – 16.00 Sleep apnea in PWS – causes, diagnosis and treatment- Assoc. Prof. Dr. Stefan Mihaicuta, UMF Timisoara

16:00 – 18.30 WORKSHOPS – MULTIDISCIPLINARY MANAGEMENT + RESULTS PRESENTATION
Communication, cognitive development and behavior of children with PWS- Assist. Prof. Dr. Violeta Stan, UMF Timisoara

The structure of the living environment and of the work place for patients with PWS- Hubert Soyer, Germany

Management of the crises and psychological aspect of the person with PWS- Norbert Hoedebeck-Stuntebeck and, Germany

European research networks. Means of working together. Christel Nourisier, General Secretary EURORDIS (France), Prof. Dr. Maria Puiu, UMF Timisoara, Psychologist Dorica Dan, APWR

18.30 DINNER


25th of April 2009

09.00-11.30 PLENARY SESSION

09.00- 09. 45 HEALTH STATE IN PWS (ADULTS)- Prof. Dr. Susanne Blichfeldt

09:45-10:00 MULTIDISCIPLINARY APPROACH FOR THE MANAGEMENT OF INDIVIDUALS WITH PRADER-WILLI-SYNDROME, PROF. DR. Greco D, Italy

10.00 – 10.30 EXPECTATIONS OF PEOPLE LIVING WITH PRADER-WILLI SYNDROME ON DIAGNOSIS AND CARE IN EUROPE, Christel Nourissier, Secretary General EURORDIS

10.30-10.45 SELF INJURY AND PRADER-WILLI SINDROME- Prof. Dr. Buono S, Italy

10.45-11..00 EFFECTS OF GH THERAPY IN TEN SUBJECTS WITH PRADER-WILLI SYNDROME- Prof. Dr. Ragusa L, Italy

11.00-11.30 COFFEE BREAK, POSTER VIEWING

11.30-13.00 PLENARY SESSION

11.30-11.45 Endocrinologic modifications in PWS patient and their approach- Prof. Dr. Corin Badiu, Institute of Endocrinology, Bucharest

11.45- 12.00 Genotype-phenotype correlation in Prader Willi syndrome- an overview of the literature- Assist. Prof. Dr. Cristina Skrypnyk, University of Oradea, Faculty of Medicine and Pharmacy, Genetics Department

12.00 – 12.15 Epigenetics, concept and practical- Prof. Dr. Natalia Cucu, University of Bucharest

12.15 – 12.30 The Fluorescence in situ hybridization (FISH) analysis in PWS- Assist. Prof. Dr. Monica Stoian, UMF Timisoara

12.30 – 12.45 WS’ QUALITY OF LIFE: SOCIAL ADJUSTMENT AND COGNITIVE SKILLS- Prof. Dr. Achutegui, I, Italy

12.45 – 13.00 Apneea de somn in PWS-cauze, diagnostic si tratament, conf. Dr. Stefan Mihaicuta, UMF Timisoara

13.00 – 13.15 Cognitive development and behavior of children with PWS- Assist. Prof. Dr. Violeta Stan, UMF Timisoara

13.15 – 13.30 New techniques of diagnosis in PWS- Assoc. Prof. Dr. Cristina Rusu, Medical Genetics, UMF Iasi

13.30-14.30 LUNCH

14.30- 15.30 PLENARY SESSION

15.30 – 15.50 Implication of NGO in education of patients with rare diseases and general population- Assist. Prof. Dr. Mihai Gafencu, President of Save the Children Foundation

15.50-15.10 Voluntary activity, students at Faculty of Medicine for rare diseases promotion- Prof. Dr. Maria Puiu, Stud. Andrada Borlovan, UMF Timisoara

15.10-15.30 COFFEE BREAK, POSTER VIEWING

15.30-17.30 WORKSHOPS- MULTIDISCIPLINARY MANAGEMENT
Trainig for teachers inclusive methods, Psiholog Mihaiela Fazacas – APWR, Psiholog Mirona Marcu, UMF Timisoara

Fitness, sport si nutritive – programe de reabilitare in SPW, Susanne Blichfeldt, Dr. Ioana Rotaru (FUNDATIA ACASA)

The management of sleep apnea in PWS- Assoc. Prof. Dr. Stefan Mihaicuta, UMF Timisoara

The Development of health services for PWS patients– Prof. Dr. Maria Puiu, UMF Timisoara, Dorica Dan – APWR

17.30-18.30 CONCLUSIONS. BEST POSTERS AWARDS
HANDLEING OF THE DIPLOMA. CLOSING OF THE CONFERENCE
18.30 DINNER

Deadline for registration :10th April 2009

Registration and information are open on the following website:
http://www.simbotours.ro/go/conference; https://anbraro.wordpress.com/2009/03/27/conferinta-est-europeana-privind-sindromul-prader-willi/

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Comments
  1. alvine says:

    Helpful Articles

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