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

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).

ISSN: 1750-1172