Portfolio

Meeting

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

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 society and other topics.

Presentation

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

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 Disorder Associations.