Table 2.
Association membership*
| 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 |
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).
GD patients represented 52% of overall membership in responding patient organisations (918 GD patients of 1771 total members).
GD patients represented 69% of overall membership in GD specific organisations (825 GD patients of 1204 total members).