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Portfolio

  • Congress

    Give presentations on the patient perspective in research, medicine development and other related topics at national and international congresses such as European Society for Human Genetics (ESHG) European Federation of Pharmaceutical Industries and Associations (EFPIA) International Conference on Birth Defects and Disabilities in the Developing World (ICBD) World Orphan Drug Conference World Alliance of Neuromuscular […]
  • Education

    Provide education to bachelor and master university students, children and other interested groups about rare diseases, the impact of a rare disease on someone’s life and societ and other topics.
  • Presentation

    Presenting on rare diseases, the impact of patient participations, patient empowerment at workshops, meetings etc.
  • Meeting

    Discuss specific topics and issues related to rare diseases with patient organisations and companies.