Anders Olauson, Sweden How Advocates Transformed the Rare Disease Landscape
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Friday, May 10, 2019 (A Rare International Dialogue) How Advocates Transformed the Rare Disease Landscape Anders Olauson, Sweden
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Anders Olauson, Sweden How Advocates Transformed the Rare Disease Landscape
- 1. Vision for Rare Diseases in 21st Century Toronto May 10-12, 2019 Agrenska: A Rare Service Model Anders Olauson Chairman, Ågrenska Foundation Chairman, NGO Committee for Rare Diseases, CfRD
- 2. Ågrenska since 1989 and more than 5 000 families
- 4. • “In order to understand how it is to be a parent to a disabled child – you have to be a parent to a disabled child yourself!” Åke Martinsson, Sweden
- 5. Today´s Ågrenska started by combine the following parties; • Hospital, • School, • Social, • Patients • the Agrenska Foundation
- 6. Agrenska programs 1989 - 2019 • Family program – focus on rare diseases, since 1989 >5 000 families • Adult program – focus on rare diseases • Respite care - all kinds of disabilities • Staff with disabilities – day centre • Personal assistance • ADHD consultant • Courses for professionals • Research • Conferences • Projects/development Queen Silvia Patron of Agrenska Sweden
- 7. ? Insurance Social care Labour, occupation Healthcare ? ? ? ? School, Education ? The reality for families is from 40 to 120 contacts with the Big 5
- 8. Silos, gaps, lack of coordination and holistic perspective Insurance School, education Social care Labour, occupation Healthcare
- 9. Lifelong and optimal life perspective Development Transitions Relations Ageing Life Activities Adulthood Independence Health Work Friends Home? ? ?Childhood Culture
- 10. The Goal Optimal lives How to get there… ! Holistic support !Lifelong perspective!
- 11. 11 Families and individuals To build competence and coping • Knowledge about the disease and its lifelong consequences • Knowledge about available support • Methods • Network !
- 12. Why patients view, -Some reflections after more than 30 year’s of experience from Agrenska program 1. Too few professionals have knowledge of rare diseases and their impact on individual and family 2. Efforts incomplete or wrong 3. Long time before diagnosis set - needless suffering 4. Charged to the wrong parts of the system 5. Society's efforts are not coordinated - system competence is lacking in many of society - must be a carrier of knowledge 6. Need to discuss opportunities instead of obstacles 7. Must always explain and "defend" their difficulties / disability due to rarity and ambient ignorance 8. Need different stages of life to gain knowledge and meet others in the same situation
- 13. Knowledge about • The individual and the diagnosis • Practical consequences • Coordination • How to adapt methods and contents, i.e. bridge the gap between medical and practical aspects 13 Professionals in the Big 5 !Translation
- 14. Structural Preconditions • Acknowledge and prioritize holistic approach • Global challenge – collaboration a possibility and necessity • Cross boarder, cross silo • Legislation and regulations 14 Institutions: the system level !
- 15. Lifelong and optimal life perspective Life ! ! ! Development Transitions Relations Ageing Activities Adulthood Independence Health Work Friends Home Childhood Culture
- 16. Examples of resource centres for RD: • Ågrenska, Sweden • Casa dos Marcos, Portugal • Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras, Spain • Debra Centre, Croatia • Eesti Agrenska, Estonia • Frambu, Norway • NoRo, Romania • list of resource centres in Europe RareResourchNet – social care network A service designed for people living with a RD and their carers
- 17. Rare diseases and the Big 5: a global challenge Insurance School, Education Social care Labour, Occupation Healthcare
- 18. New York 11 /11 2016
- 20. Six SDGs with particular relevance to rare diseases 20 Ågrenska and the SDGs
- 21. THANK YOU!
- 22. 22