Description
A central focus of this year’s Rare Disease Day conference in Norway will be the follow-up on the national strategy for rare diagnoses. The Ministry has recently received the report “Improving Services for Patients with Rare Conditions” from the South-Eastern Norway Regional Health Authority concerning the organisation of services in the field of rare diseases. Both patient organisations and professional communities are eager to learn about the next steps, emphasising the importance of looking forward to advancements in this area.
Mental health and coping mechanisms will also play a significant role in the day’s program. Nadia Ansar, who has recently published her book “My Shame”, will engage in a sofa chat. As both a professional and a relative, she brings valuable perspectives that will be beneficial for both the user side and professionals. Simen and Bjørn Gunnar Andersen will share their experiences living with Duchenne Muscular Dystrophy and being caregivers, offering insights into the challenges and triumphs of navigating life with a rare disease.
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