Norway’s Role in JARDIN: A Successful Virtual Meeting Strengthens European Collaboration

Norway’s Role in JARDIN: A Successful Virtual Meeting Strengthens European Collaboration

—by Kari Andresen

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On Friday 6. December, Norway hosted a virtual JARDIN meeting on Teams, gathering key national stakeholders to discuss Norway’s vital role in the European JARDIN collaboration.

As an active participant in this initiative, Norway is dedicated to advancing solutions that improve care for rare diseases across Europe

The meeting, chaired by Toril Orrestad, Chief Specialist at the South-Eastern Norway Regional Health Authority, provided a dynamic platform for sharing knowledge, exchanging ideas, and receiving constructive feedback.

JARDIN-first-implemention-steps

A highlight of the meeting was the participation of Professor Till Voigtländer, JARDIN coordinator from the Medical University of Vienna. Professor Voigtländer’s insights enriched the discussions, emphasizing the importance of Norway’s contributions and how they align with JARDIN’s ambitions. His presence highlighted the value of fostering collaboration between national efforts and European initiatives.

The program featured contributions from prominent Norwegian stakeholders:

• Torunn Omland Granlund, Director at the Ministry of Health and Care Services, shared insights into why Norway is committed to participating in JARDIN.
• Kristin Ørstavik, Norway’s representative to Euro-NMD and leader of the national network, and Gunnar Douzgos Houge, leader of the national ERN-ITHACA network, presented the expectations of ERN members for JARDIN’s contributions.
• Ingunn Westerheim, a patient representative from the Norwegian Federation of Organisations of Persons with Disabilities (FFO), brought forward the hopes and needs of the patient community.
• Stein Are Aksnes, Head of the National Advisory Unit for Rare Disorders (NKSD), along with Ingrid B. Helland, Medical Advisor at NKSD, and Ulf Sigurdsen, Head of e-health at South-Eastern Norway Regional Health Authority, outlined specific work packages and their implications for Norway.

Toril Orrestad and Stein Are Aksnes

In addition to these presentations, the meeting featured an open dialogue session where participants raised questions, shared their perspectives, and provided constructive criticism.

This feedback will help refine Norway’s efforts and enhance its contributions to the JARDIN initiative.

The event underscored Norway’s commitment to advancing JARDIN’s mission and demonstrated the importance of collaboration between healthcare authorities, patient communities, and European networks

We extend our heartfelt thanks to all presenters and participants, particularly to Professor Voigtländer and Toril Orrestad, for making this event a success. Together, we are paving the way for a more connected and effective approach to rare disease research and care.

Stay tuned for further updates on Norway’s ongoing contributions to the JARDIN collaboration!