Official opening of congress

Welcome speech and introduction (APWR, IPWSO, EURORDIS, Health Ministry, Innovation Norway, partners and local authorities) – Chair – Dorica Dan

NEWS IN PWS

Moderators: Christel Norissier, France, EURORDIS – EUCERD; Dorica Dan, APWR

The 7th Scientific conference of the International PWS Organisation, Antony Holland, Cambridge, UK

IPWSO International Prader-Willi Syndrom Organisation, Susanne Blichfeldt

News about Prader-Willi Syndrome. Clinical research presented at the IPWSO Conference in Taiwan 2010, Susanne Blichfeldt. MD. Paediatric Department. Glostrup University Hospital. 2600 Glostrup. Denmark

Results of the Caregiver’s Conference in Tapei, Hubert Soyer, Germania

The Romanian Prader Willi Association – Prader Willi Syndrome a model for approaching rare diseases in Romania, Dorica Dan – president RPWA;

Presentation of the Project “Norwegian Romanian (NoRo) Partnership for Progress in Rare Diseases”, Lázár Zsuzsa, RPWA, Zalau

General health in Prader-Willi syndrome, Susanne Blichfeldt MD. Department of Paediatrics. Glostrup University Hospital. 2600 Glostrup, Denmark

Specific issues in PWS

Moderators: Susanne Blichfeldt (Denmark), Maria Puiu (Timisoara, Romania), Arnesen Ragnhild (PWA Norway), Vlad Gorduza (Iasi, Romania)

Romania: Research in PWS – Together with and for Patients, Maria Puiu1, Mihai Gafencu1, Dorica Dan2, Margit Serban1,
1.University of Medicine and Pharmacy, Timisoara, Romania, 2. APWR, Zalau

Epigenetic mechanisms underlying the imprinting defects: implications for the establishment of diagnostic testing schemes for Prader Willi syndrome in Romanian population. Natalia Cucu1, Gabriela Anton2, Maria Puiu3, Cosmin Arsene1, Anca Botezatu2, Corin Badiu4, Vasilica Plaiasu5, Daniela Nedelcu5, Radu Stefanescu5
1- University of Bucharest, Faculty of Biology, Dept of Genetics, Epigenetics Laboratory
2- “Stefan Nicolau” Institute of Virology, Dept of Molecular Biology, Bucharest
3- Medical and Pharmaceutical University Timisoara
4- “N Parhon” Institute of Endocrinology, Bucharest
5- Genexplore, Bucharest

The cytogenetic investigation before and after birth, Gorduza E.V.1
1 University of Medicine and Pharmacy „Gr. T. Popa” Iaşi, Department of Medical Genetics

Endocrine obesity in Prader Willi syndrome, Corin Badiu, Gabi Madaras, National Institute of Endocrinology, Bucharest, Romania

Neurological aspects in PWS, Violeta Stan, University of Medicine and Pharmacy “V Babes”, Timisoara

Obesity and diabetes in Prader Willi Syndrome (PWS), Aurelia Szekely, Zsuzsa Lázár, Zalau

Prader-Willi Syndrome rare facts – cardiac, renal and poisoning complications, Gafencu Mihai, Gabriela Doros, Maria Puiu, University of Medicine and Pharmacy “V Babes”, Timisoara

Reduced deep sleep efficiency without excessive daytime somnolence in advanced and severe concomitant obstructive sleep apnea – hypopnea and Prader Willi syndrome, Stefan Frent, Stefan Mihaicuta, UMF V. Babes Timisoara

Recommendations for the Diagnosis and Management of Prader-Willi Syndrome. Effects of growth hormone therapy in children , Dana David, Raluca Dumache, UMF V. Babes Timisoara

Orthopedic and Surgical Features in Patients with Prader Willi Syndrome, Popoiu MC1, David VL2, Boia ES1, Maria Puiu1
1.University of Medicine and Pharmacy “Victor Babes” Timisoara
2.Emergency Children’s Hospital “Louis Turcanu” Timisoara

IPWSO – achievements and perspectives; Giorgio Fornasier – CEO IPWSO;

Interdisciplinary approaches in PWS.

Moderators: Giorgio Fornasier, Antony Holland, Kaja Giltvedt

The impact of the National plans on the life of people living with Prader-Willi syndrome in France, Christel Nourisier, Franta, BoD EURORDIS, EU CERD member

Psychiatric aspects in PWS, Antony Holland, Cambridge, Great Britain

Ethical management of patients with Prader-Willi syndrome across life span, Violeta Olivia Stan, University of Medicine and Pharmacy “V Babes”, Timisoara

Particular forms of Prader Willi syndrome – clinical and genetic study, C. Rusu, C. Vulpoi, E. Braha, M. Volosciuc, I. Ivanov, C. Gorduza, V. Gorduza, M. Puiu, D. Dan, UMF Iasi

Nutrition management in Prader Willi syndrome, Adela Chirita, .University of Medicine and Pharmacy “Victor Babes” Timisoara

Prader-Willi syndrome and physiotherapy, Giltvedt, Kaja, Lisen Mohr, Frambu Resource Centre for Rare Disorders, Oslo Norway

Changes throughout life.

Moderators: Anna and Giuseppe Baschirotto, BIRD Italia, Ioana Rotaru –ACASA Foundation, Romania

Transition to adulthood: What is a good life for persons with PWS? Ragnhild Arnesen, Norway Prader Willi Assocoiation

Understanding and managing educational issues in Prader-Willi syndrome, Amalia Raluca Sabău, The Romanian Prader Willli Association

Behavioral interventions in PWS, Simona Dumitriu, University of Medicine and Pharmacy “V Babes”, Timisoara

Art therapy activities for PWS children and teenagers, Mihaiela Fazacas, Emese Darko, APWR.

Nursing aspects for PWS patients, Livia Berinde, Claudia Goron, Rehabilitation, Treatment and Care Center “ACASA” Zalau, Romania

Best practice examples in approaching PWS patients

Moderators: Lisen Julie Mohr, Frambu, Norvegia, Conf. Dr. Crisina Rusu, UMF Iasi

Personal experience in PWS, Giorgio Fornasier, Italy

Disease specific rehabilitation in Prader-Willi syndrome, Emanuele Grolla1, Gilberto Andrighetto1, Pietro Parmigiani1, Uros Hladnik1, Gabriela Ferrari1, Roberta Bernardelle1, Martina Dal Lago1, Anna Albarello1, Giuseppe Baschirotto1, Giuseppe Filippi2, Roberto Lovato3, Diego Dolcetta 1
1“M. Baschirotto” Institute for Rare Diseases – B.I.R.D., Centro Diagnostico Riabilitativo per la Diagnosi Terapia e Cura delle Malattie Rare, Costozza di Longare-Vicenza, Italy
2“Camillo de Lellis” Hospital, Department of Rehabilitation “Alto Vicentino”, ULSS4-Schio, Italy; 3“Villa Berica” Hospital, Vicenza, Italy

“NORO”- ONE STEP TOWARDS A SUCCESSFULL REHABILITATION, Ioana Rotaru, Rehabilitation, Treatment and Care Center “ACASA” Zalau, Romania

The project “The National Center for employment opportunities for people with multiple sclerosis and other neurological rare diseases – Ability Access”, Claudia Torje – manager de proiect, Romanian Multiple Sclerosis Society

Rare Disease Communities, Robert Pleticha, Online Patient Communities Coordinator, Eurordis

Volunteers for rare diseases- 3 years, Iulia Jurca-Simina, Florin Jurca-Simina, Ionela Moaca, Pop Norbert, Berci Stefan, Iulia Popa, Mihai Gafencu, Maria Puiu – volunteers in “Save the Children” organization, Timis office

Experiences in Denmark, Susanne Blichfeldt

The Norwegian Way

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