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Table 2 Association membership*

From: The European Gaucher Alliance: a survey of member patient organisations’ activities, healthcare environments and concerns

Member association's country Total membership Total GD patient members GD patients as%of membership Total GD patients in country No. of GD children (under 18) in country No. of GD adults in country GD patients in association as% of patients in country
Austria 40 20 50 20 2 18 100
Bosnia & Herzegovina 237 4 2 4 0 4 100
Denmark 32 17 53 17 5 12 100
Estonia 4 3 75 4 0 4 75
Finland 15 4 27 10 2 8 40
Germany 210 155 74 335 35 300 46
Greece 200 79 40 80 10 70 99
Israel 500 350 70 850 300 550 41
Italy 114 114 100 240 0 240 48
Jordan 30 10 33 28 19 9 36
Latvia 30 0** 0 3 1 2 0
Lithuania 9 7 78 8 2 6 88
Macedonia 100 10 10 12 6 6 83
Serbia 35 28 80 36 7 29 78
Slovenia 37 17 46 19 2 17 89
Spain 110 60 55 300 100 200 20
Sweden 68 40 59 55 10 45 73
TOTAL 1771 918 52 2021 501 1520 45
  1. GD: Gaucher disease; *Only member organisations providing complete data (17 respondents); **The parents of child with GD are members; child is not a member; Italics: Associations for GD + other diseases. Not in italics: GD specific associations (n = 13).
  2. GD patients represented 52% of overall membership in responding patient organisations (918 GD patients of 1771 total members).
  3. GD patients represented 69% of overall membership in GD specific organisations (825 GD patients of 1204 total members).