September 4 - 5, 2014 Helsinki, FINLAND 3rd NORDIC CONFERENCE ON RARE DISEASES Thursday, September 4 8.30 - 12.00 Crowne Plaza Auditorium 8.30 - 9.00 9. 00 - 9.10 Registration Welcome and Opening Words Ministry of Social Affairs and Health, Finland Plenary Session NORDIC COOPERATION WITHIN RARE DISEASES Moderator: Helena Kääriäinen, Research Professor, the Finnish National Institute for Health and Welfare Commentators: Hedevig Castberg, FFO, Norway and Birthe Byskov-Holm, Själdene Diagnoser, Denmark 9.10 - 9.25 Sustainable Nordic Welfare - Rare Diseases 9.25 - 9.40 Rare Diseases Nordic Network of Patient Organizations Speaker from the Welfare Committee of the Nordic Council Hedevig Castberg, FFO, Norway and Birthe Byskov-Holm, Själdene Diagnoser, Denmark 9.40 - 9.55 Patient-centered care and patient involvement Anders Olauson, President of the European Patients’ Forum 9.55 - 10.00 Summary and discussion 10.00 - 10.50 Coffee, poster presentations and networking NATIONAL PLANS – HIGHLIGHTS AND CHALLENGES 10.50 - 11.00 Sweden Veronica Wingstedt de Flon, General Manager, National Funktion for Rare Diseases (NFSD) 11.00 - 11.10 Norway Stein Are Aksnes, General Manager, Norwegian Resourse Services for Rare Disorders (NKSD) 11.10 - 11.20 Denmark Marianne Jespersen, Senior Medical Officer, Danish Health and Medicine Authority 11.20 - 11.30 Iceland Solveig Sigurðardóttir, the State Diagnostic and Counselling Centre 11.30 - 11.40 Finland Jaakko Yrjö-Koskinen, Ministerial Counsellor, Health/Medical Affairs, Dpt for Social and Health Services, the Ministry of Social Affairs and Health 11.40 - 12.00 Panel discussion on the national plans 12.00 - 13.00 Lunch THE FINNISH NETWORK FOR RARE DISEASES September 4 - 5, 2014 Helsinki, FINLAND 3rd NORDIC CONFERENCE ON RARE DISEASES Thursday, September 4 13.00 - 16.00 Auditorium 1 & 2 RESEARCH AND EXPERTISE IN RARE DISEASES Parallel Sessions 1 A & 1 B Session 1 A (Auditorium 1) Session 1 B (Auditorium 2) Nordic Cooperation and Centers Research with and for Patients of Expertise Moderators 13.00 - 13.20 13.20 - 13.40 13.40 - 14.00 Vibeke Lubanski, Denmark Moderator from Sweden Establishing a dentistry resource center - the importance of networking Birgitta Bergendal, Odont.dr, DDS, The Institute for postgraduate Dental Education Nordic network of CHARGE syndrome -the view from Iceland Solveig Sigurðardóttir, MD, PhD, State Diagnostic and Counselling Centre, Iceland Patients legal right in cross-border healthcare and social services Ulrika Krook, legal advisor, SAMS samarbetsförbundet kring funktionshinder rf Nordic Multi-Centre Study on Scaphocephaly using the Raredis database Hanne Hove, Rigshospitalet, Copenhagen University Hospital The Role of Patient Organization in a Scientific Project - an example of collaboration Lena Lande Wekre, MD, PhD, TRS National Resource Centre for Rare Disorders Initiation of a new multi-purpose rare disease patient registry in Norway Øivind Juris Kanavin, MD Specialist in Paediatrics, Frambu Centre for Rare Disorders 14.00 - 14.45 Coffee, poster presentations and networking 14.45 - 15.45 Multi-stakeholder perspectives of the Swedish rare disease health care system i. National coordination: Veronica Wingstedt de Flon, GM, Nationella Funktionen Sällsynta Diagnoser ii. Center of excellence: Ola Hjalmarsson, Professor of Paediatrics, Drottning Silvias barn- och ungdomssjukhus iii. Patient organisation: Elisabeth Wallenius, President, Rare Disease Sweden iv. Family support services: Annica Harryson, GM, Ågrenska Boys with sex chromosome aneuploidies Krister Fjermestad, Dr, Frambu Resource Centre for Rare Disorders Not healthy, not ill: The social stigma of living on a medical diet Plata Sofie Diesen, MSsc, sociologist, Centre for Rare Disorders, Oslo University Hospital Aging in Autism Spectrum Disorders Michael B. Lensing, Advisor/special educational therapist, Oslo University Hospital, Rikshospitalet, The National Autism Unit 15.45 - 16.00 Summary of the session Summary of the session 19.00 - 21.00 Welcome reception at the House of Estates (Säätytalo) in Helsinki hosted by The Ministry of Social Affairs and Health THE FINNISH NETWORK FOR RARE DISEASES September 4 - 5, 2014 Helsinki, FINLAND 3rd NORDIC CONFERENCE ON RARE DISEASES Friday, September 5 9.00 - 12.00 Auditorium 1 & 2 EMPOWERMENT AND EXPERIENCE BASED PRACTICES Parallel Sessions 2 A & 2 B Moderators 9.00 - 9.20 9.20 - 9.40 9.40 - 10.00 Session 2 A (Auditorium 1) Session 2 B (Auditorium 2) Empowerment and Experience Based Practices Research with and for Patients Rebecca Tveit Skarberg, Norway Guðný Stefánsdóttir, Iceland Challenges in facilitation for children with narcolepsy: (H1N1) Pandemrix vaccination Hilde Norsted Andresen, Specialized Child Educator, Norwegian Resource center for AD/HD, Tourette Syndrom and Narcolepsy Sexuality and bladder exstrophy/epispadia; Questions you don`t dare ask your parents Line Mediå, Counsellor/Nurse, Centre for Rare Disorders, Oslo University Hospital, Norway Living with a rare disease - creative video making tasks Kari Hagen, Head of Communication and Innovation, Frambu centre for rare disorders Individual plans for schoolchildren with rare diagnosis: families satisfaction with services Brede Dammann, Social worker, TRS National Resource centre for Rare Disorders, Sunnaas Adults with Congenital Limb deficiency (CLD) in Norway; pain and work-participation Heidi Johansen, TRS, National Resource center for rare disorders, Sunnaas, Norway Developing a model for multidisciplinary study: Kleefstra and Wolf-Hirschhorn syndrome Lise Beate Hoxmark, Advisor, social worker, Frambu Resource Centre for Rare Disorders 10.00 - 10.40 Coffee, poster presentations and networking 10.40 - 11.00 School-starters with a rare disorder - A model for supplying information to school personnel in Norway Susan Sødal, Counsellor, Centre for Rare Disorders, Oslo University Hospital A good life with Long-Term Mechanical Ventilation (LTMV) Irene Lund, Leader, National Neuromuscular Centre (NMK)/ University Hospital of North Norway Experience based education in Finland Speaker will be confirmed later Cognitive Rehabilitation of Executive Function in Adults with Spina Bifida Myelomeningocele Jan Stubberud, Neuropsychologist, TRS, National Resource center for rare disorders, Sunnaas Paediatric dentist participating in diagnosing rare diseases: case Coffin Lowry syndrome Johanna Norderyd, Dr, National Oral Disability Centre for Rare Disorders, The Institute for Postgraduate Dental Education (Mis)conceptions among siblings of children with rare disorders Torun Marie Vatne, Psychologist PhD, Frambu resource centre for rare disorders 11.45 - 12.00 Summary of the session Summary of the session 12.00 - 13.00 Lunch 11.00 - 11.25 11.25 - 11.45 THE FINNISH NETWORK FOR RARE DISEASES September 4 - 5, 2014 Helsinki, FINLAND 3rd NORDIC CONFERENCE ON RARE DISEASES Friday, September 5 13.00 - 15.30 Crowne Plaza Auditorium Plenary Session RARE DISEASES HAVE NO BORDERS Moderator: Anders Olauson, President of the European Patients’ Forum Commentator from Finland 13.00 - 13.15 Development and actions on a Pan-European level Terkel Andersen, President of EURORDIS 13.15 - 13.30 European reference networks Jaakko Yrjö-Koskinen, Ministerial Counsellor, Health/Medical Affairs, Dpt for Social and Health Services, the Ministry of Social Affairs and Health 13.30 - 13.45 Cross-border genetic testing Helena Kääriäinen Research Professor, the Finnish National Institute for Health and Welfare 13.45 - 14.20 Coffee, poster presentations and networking 14.20 - 14.35 Utilizing the services from a centre - a journey to the future Kjetil Ørbeck, CEO, Frambu Resource Centre for Rare Disorders 14.35 - 14.50 Looking to the future: Patient-professional partnership Cristin Lind, Project Advisor, Rare Disease Sweden 14.50 - 15.10 From here to the future - summary of the NCRD 2014 Moderators from the plenary sessions 15.10 - 15.25 Musical program Rolling Apples -IPad Band 15.25 - 15.30 Announcing the next NCRD 2016 “Passing on the baton” to the representative of Denmark 15.30 We thank you all for participating and wish everyone a safe journey home Please note, that the program content may be subject to have minor changes and adjustments. THE FINNISH NETWORK FOR RARE DISEASES
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