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Table 1 PIOs participating in the study

From: Patient and interest organizations’ views on personalized medicine: a qualitative study

PIO name Membership Country
DEBRA Hrvatska (Dystrophic Epidermolysis Bullosa Research Association) Approx. 50 families Croatia
Genetic Alliance UK >100 organizational members UK
Genetic Alliance USA >1,000 organizational members USA
LUPUS Europe Approx. 22 country memberships Denmark
Sarcoma Approx. 350 individual members Norway
The European AIDS Treatment Group Approx. 110 individual members Belgium
The European Umbrella Organisation for Psoriasis Movements (EUROPSO) Approx. 20 country memberships Norway
The International Patient Organisation for Primary Immunodeficiencies (IPOPI) Approx. 55 country memberships UK
The Norwegian Breast Cancer Society Approx. 14,500 individual members Norway
The Norwegian Cancer Society Approx. 113,000 individual members Norway
The Norwegian Childhood Cancer Organization >3,000 individual members Norway
The Norwegian Council for Mental Health Approx. 29 organizational members Norway
The Norwegian Diabetes association Approx. 40,000 individual members Norway