Members Meeting News
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Meeting Summary
Welcome & Introduction: Flavia Galletti outlined objectives covering survey insights, financial updates, communication tools, and collaborations.
Member Survey Insights: Members identified a need for better communication, financial transparency, and strategic partnerships, with suggestions to enhance digital efforts and member collaboration.
Financial Overview & Membership Fees: PKD International holds approximately 26,000 CHF (approximately 27,000 EUR). A proposal was made to hire a project manager and communication agency, with discussion on membership fees and alternative funding sources.
Communication & Collaboration Tools: A WhatsApp group will be established to improve engagement, and a new collaboration tool was introduced with members requesting additional details.
Communication Strategy: A new digital engagement plan with agency Robespierre was presented, featuring structured content series on scientific updates and patient advocacy, with LinkedIn as the main professional networking platform.
Collaboration & Engagement: A Communication Task Force was formed. Research collaboration was discussed with ERKNet and international partnerships.
Regional Updates: PKD Australia reported on ISN collaborations, volunteer needs, and gene therapy trials. General discussion covered financial review, LinkedIn outreach, and flexible membership fees.
Closing & Next Steps: Members will provide feedback on fees and communication, with follow-up from the communication agency and project manager, plus LinkedIn engagement and scheduling of the next meeting.