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September 4 - 5, 2014
Helsinki, FINLAND
3rd NORDIC CONFERENCE ON RARE DISEASES
Thursday, September 4
8.00 - 12.00 Crowne Plaza Auditorium
8.00 - 9.00
9. 00 - 9.20
Registration
Welcome and Opening Words
Robert Hejdenberg, Chair of the Rarelink Steering Group
Kristina Franck, Chair of the NCRD 2014 Local Organising Committee
Laura Räty, Minister of Social Affairs and Health, Finland
Plenary Session
NORDIC COOPERATION WITHIN RARE DISEASES
Moderator: Helena Kääriäinen, Research Professor, National Institute for Health and Welfare, Finland
9.20 - 9.35
Future Nordic Co-operation on Health
Bo Könberg, Appointed investigator for the Nordic Council of Ministers
9.35 - 9.50
Rare Diseases Nordic Network of Patient Organizations
Birthe Byskov-Holm, Rare Diseases Denmark
9.50 - 10.05 Patient-centered care and patient involvement
Anders Olauson, President of the European Patients’ Forum
10.05 - 10.10 Summary and discussion
10.10 - 10.50
Coffee, poster presentations and networking
NATIONAL PLANS – HIGHLIGHTS AND CHALLENGES
Moderator: Helena Kääriäinen, Research Professor, National Institute for Health and Welfare, Finland
Commentator: Birthe Byskov-Holm, Rare Diseases Denmark
10.50 - 11.00 Sweden
Jonas Bergström, Programme Officer, the National Board of Health and Welfare
11.00 - 11.10 Norway
Stein Are Aksnes, General Manager, Norwegian National Advicery Unit on Rare Disorders
11.10 - 11.20 Denmark
Marianne Jespersen, Senior Medical Officer, Danish Health and Medicine Authority
11.20 - 11.30 Iceland
Solveig Sigurðardóttir, MD, PhD, 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 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
RESEARCH AND EXPERTISE IN RARE DISEASES
Parallel Sessions
Session 1 A
Session 1 B
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
Kristina Gustafsson Bonnier, Sweden
Establishing a dentistry resource center:
the importance of networking
Birgitta Bergendal, Odont.dr, DDS, Institute for
postgraduate Dental Education (SE)
Nordic network of CHARGE syndrome:
the view from Iceland
Solveig Sigurðardóttir, MD, PhD, State
Diagnostic and Counselling Centre (IS)
Patients legal right in cross-border healthcare
and social services
Ulrika Krook, legal advisor, SAMS samarbetsförbundet kring funktionshinder rf (FI)
Nordic multi-centre study on Scaphocephaly
using the Raredis database
Hanne Hove, MD, DMSc, Rigshospitalet,
Copenhagen University Hospital (DK)
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 (NO)
Initiation of a new multi-purpose rare disease
patient registry in Norway
Øivind Juris Kanavin, MD Spec. in Paediatrics,
Frambu Resource Centre for Rare Disorders (NO)
14.00 - 14.45
Coffee, poster presentations and networking
14.45 - 15.45
Improving health together
1. Patient organisation
Elisabeth Wallenius, President, Rare Disease
Sweden (SE)
2. National coordination
Veronica Wingstedt de Flon, GM, Nationella
Funktionen Sällsynta Diagnoser (SE)
3. Center of excellence
Ola Hjalmarsson, Professor of Paediatrics,
Drottning Silvias barn- och ungdomssjukhus (SE)
4. Family support services
Annica Harrysson, GM, Ågrenska (SE)
Boys with sex chromosome aneuploidies
Krister Fjermestad, Dr, Frambu Resource Centre for
Rare Disorders (NO)
15.45 - 16.00
Summary of the session
Summary of the session
16.15 - 18.00
Social gathering at the Winter Garden, Crowne Plaza Hotel
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 (NO)
Aging in Autism Spectrum Disorders
Michael B. Lensing, Advisor/ special educational
therapist, Oslo University Hospital, Rikshospitalet,
The National Autism Unit (NO)
Mingle and catch up with colleagues over a light salad buffet
19.00 - 21.00
Welcome reception at the House of Estates (Säätytalo) in Helsinki
A cocktail reception 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
EMPOWERMENT AND EXPERIENCE BASED PRACTICES
Parallel Sessions
Moderators
9.00 - 9.20
9.20 - 9.40
9.40 - 10.00
Session 2 A
Session 2 B
Empowerment and Experience
Based Practices
Research with and for Patients
Rebecca Tvedt Skarberg, Norway
Guðný Stefánsdóttir, Iceland
Challenges in facilitation for children with
narcolepsy: (H1N1) Pandemrix vaccination
Hilde Norsted Andresen, Specialized Child
Educator, Resource center for AD/HD, Tourette
Syndrom and Narcolepsy (NO)
Sexuality and bladder exstrophy/epispadia;
Questions you don´t dare ask your parents
Line Mediå, Counsellor/Nurse, Centre for Rare
Disorders, Oslo University Hospital (NO)
Living with a rare disease - creative video
making tasks
Kari Hagen, Head of Communication and
Innovation, Frambu Resource Centre for Rare
Disorders (NO)
Individual plans for school children with rare
diagnosis: families satisfaction with services
Brede Dammann, Social worker, TRS National
Resource centre for Rare Disorders, Sunnaas (NO)
Adults with Congenital Limb Deficiency (CLD) in
Norway; pain and work-participation
Heidi Johansen, TRS, National Resource center for
Rare Disorders, Sunnaas (NO)
Developing a model for a multidisciplinary
study: Kleefstra and Wolf-Hirschhorn
syndrome
Heidi Elisabeth Nag, Educational Adviser, Frambu
Resource Centre for Rare Disorders (NO)
10.00 - 10.45
Coffee, poster presentations and networking
10.45 - 11.05
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 (NO)
A good life with Long-Term Mechanical
Ventilation (LTMV)
Irene Lund, Leader, National Neuromuscular
Centre (NMK)/ University Hospital of North
Norway (NO)
Experience based education in Finland
Milla Roos, Coordinator, the Finnish Parkinson
Association (FI)
Cognitive rehabilitation of executive function in
adults with Spina Bifida Myelomeningocele
Jan Stubberud, Neuropsychologist, TRS, National
Resource center for rare disorders, Sunnaas (NO)
11.45 - 12.00
Summary of the session
Summary of the session
12.00 - 13.00
Lunch
11.05 - 11.25
11.25 - 11.45
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, Jönköping (SE)
(Mis)conceptions among siblings of children
with rare disorders
Torun Marie Vatne, Psychologist PhD, Frambu
Resource Centre for Rare Disorders (NO)
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: Henrik Gustafsson, Lawyer, Finnish Association of People with Physical Disabilities
13.00 - 13.15 Development and actions on a Pan-European level
Lene Jensen, CEO, Rare Diseases Denmark
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, Finland
13.30 - 13.45 Cross-border genetic testing
Helena Kääriäinen, Research Professor, National Institute for Health and Welfare, Finland
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, Norway
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 and commentators from the plenary sessions
15.10 - 15.25 Musical program
Rolling Apples iPad Band, Finland
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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