Meaningful Patient Involvement in Rare Disease Trials: From Recruitment to Partnership

  • Insights from the Nordic Patient Empowerment Survey (Nordic Rare Disease Summit 2025) and the Danish Rare Disease Survey (Guldkundeunders gelsen 2025) and their relevance for clinical trial design and patient engagement
  • Building trust and improving communication to support participation in healthcare and clinical research
  • Understanding the practical barriers faced by people living with rare diseases and how they may influence clinical trial participation
  • Moving from consultation to partnership: patient perspectives on involvement and decision-making throughout the research journey
  • Leveraging insights from Nordic patient organisations to better understand patient needs and priorities in rare disease research