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Table 3 Participant characteristics

From: Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study

Patients
 AgeGenderGroup of rare disease
 23femaleGenetic skin disease
 32maleCystic fibrosis and pulmonary disease
 32maleImmunodeficiency
 39maleSkeletal dysplasia
 66maleGenetic skin disease
 85femaleConnective tissue disease
 70maleConnective tissue disease
 72maleGenetic kidney disease
 47maleCongenital metabolic disease
 50femaleImmunodeficiency
 53femaleGenetic skin disease
 58femaleGenetic disease of the digestive tract
 54femaleCystic fibrosis and pulmonary disease
 57femaleImmunodeficiency
 44femaleNeuromuscular disease
 43femaleCystic fibrosis and pulmonary disease
 47femaleNeuromuscular disease
 71maleNeuromuscular disease
 44femaleGenetic skin disease
 53femaleConnective tissue disease
 72maleGenetic skin disease
 48femaleImmunodeficiency
 54femaleGenetic skin disease
 58femaleCongenital metabolic disease
 72femaleImmunodeficiency
 48femaleGenetic kidney disease
 47femaleCongenital blood formation disease
 44femaleSkeletal dysplasia
 27femaleCongenital blood formation disease
 36femaleGenetic kidney disease
 40femaleCongenital metabolic disease
 61femaleNeuromuscular disease
 48maleCongenital blood formation disease
 44femaleGenetic eye disease
 52femaleGenetic eye disease
 46maleCystic fibrosis and pulmonary disease
 60maleNeuromuscular disease
 62femaleNeuromuscular disease
 48femaleGenetic eye disease
 61femaleConnective tissue disease
 66femaleCongenital metabolic disease
 18femaleCongenital blood formation disease
 64femaleCongenital metabolic disease
 37maleCystic fibrosis and pulmonary disease
 49femaleCongenital metabolic disease
 59maleGenetic kidney disease
 70maleConnective tissue disease
 45femaleGenetic kidney disease
 51femaleGenetic kidney disease
 62femaleGenetic eye disease
 39femaleNeuromuscular disease
 51maleImmunodeficiency
 40maleSkeletal dysplasia
 74maleCystic fibrosis and pulmonary disease
 69femaleImmunodeficiency
Relatives
 AgeGenderGroup of rare disease
 44maleNeuromuscular disease
 48maleSkeletal dysplasia
 28femaleGenetic skin disease
 46femaleGenetic skin disease
 60femaleSkeletal dysplasia
 50maleNeuromuscular disease
 43femaleSkeletal dysplasia
 46maleCongenital metabolic disease
 40femaleGenetic skin disease
 49femaleCystic fibrosis and pulmonary disease
 45femaleGenetic skin disease
 32femaleGenetic disease of the digestive tract
41maleSkeletal dysplasia