Table 1 Numbers of positive responses out of 106 received responses to the questions « do you know » and « do you collaborate with» the following organizations. Full names and/or field of activity of the listed organizations are given in the text

ESFRI Infrastructures

BBMRI

55

14

EATRIS

33

4

ECRIN

51

8

ELIXIR

37

2

OPENSCREEN

23

0

EUROBIOIMAGING

29

1

INFRAFRONTIER

15

0

ISBE

24

1

MIRRI

13

1

Registries

E---HOD (homocystinurias, methylation)

66

39

EIMD

65

37

Euroglycanet

54

10

ICG Gaucher reg.

58

18

Pompe

43

21

MPS I reg.

53

43

International PMSI reg.

62

19

Hunter Outcome survey

58

39

International Morquio reg.

55

20

lInternationa Niemann---Pick reg.

61

20

Fabry Outcome survey

60

30

International Fabry reg.

66

20

Galactosemia patient reg.

53

29

International organisations

EURORDIS

87

27

ISNS

53

15

SSIEM

93

71

SIMD

55

15

ERNDIM(QI)

75

40

IRDIRC

61

18