28 Feb 2020
Fri 28 February, 2020
Thon Hotel Opera
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A rare sight - new perspectives on rare diseases 28 February 2020 Thon Hotel Opera, Oslo
Hosted by Sjeldendagen

Annual conference on rare diseases. In 2020 focusing on a new national strategy for Norway, access to treatment, and living your life with a rare disease. Host: Aslak Bonde. Streaming available.

Welcome from Eva Buschmann, Chair of The Norwegian Federation of Organisations of Disabled People, (FFO)

Opening note from Synne Lerhol, member of The Norwegian Biotechnology Advisory Board

The Norwegian association for the pharmaceutical industry, (LMI) present their work on rare diseases. By Hege Kristin Hagen & Line Walen

New methods - who does what? Presented by Ellen Nilsen and Karianne Mollan Tvedt, members of the Secretariat ("Nye metoder")

The future right to inclusive education? Presented by Walter Frøyen, Regional Director at Statped Southeast, special education services

Which role should Norway have? By Terje Rootwelt, Head of Division of Paediatric and Adolescent Medicine, Oslo University Hospital

Legless, but not helpless! By Liv Tone Lind

Everyone can! 12 everyday-heroes tell their stories. By author Christina Skreiberg

Key note speech, State Secretary from Ministry of Health and Care, Anne Grethe Erlandsen

National strategy for rare diseases: Current status and continued involvement of parties working in this area. By Torunn Janbu, Head of Department, Norwegian Directorate of Health

The future’s expertise service. By Stein Are Aksnes, Director of Norwegian National Advisory Unit on Rare Disorders

The user organisation’s expectations to a national strategy on rare diseases. By Line Skåtøy, chair of the Norwegian Association of Youth with Disabilities (Unge funksjonshemmde), and Ingunn Westerheim, Senior Advisor, The Norwegian Federation of Organisations of Disabled People (FFO)

Together for equal services. By Arvid Heiberg, MD, PhD, Consultant, Professor Emeritus

The day comes to close with a brief speech from Rebecca Tvedt Skarberg, leader of the conference committee

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