Table 2 Impact of COVID-19 on rare disease organisations and patients across the Asia Pacific region

Impact on rare disease organisations’ operation

1. Daily operations

42%*

33%*

41%*

50%*

43%*

60%*

2. Reduced capacity or completely non-functional

63%

72%

48%

56%

86%

50%

3. Support patients’ physical & psychological wellbeing

55%*

47%*

59%*

63%*

43%*

40%*

4. Financial impacts (e.g. funding)

33%*

27%*

14%*

50%*

71%*

40%*

5. Support work made more difficult or much more difficult during the pandemic

63%

72%

47%

75%

71%

67%

6. Able to adapt and digitalise operations

58%*

0%*

63%*

100%*

50%*

0%*

7. Able to supply protective gear

21%*

50%*

13%*

0%*

50%*

0%*

Impact on rare disease patients

1. Faced challenges accessing medical care or treatment / avoided seeking care for complications related to their rare condition

86%*

100%*

83%*

81%*

57%*

80%*

2a. Difficulty accessing medical care: scheduled appointments postponed or cancelled

68%*

67%*

79%*

63%*

57%*

60%*

2b. Had their rehabilitation therapies cancelled or postponed

12%*

20%*

8%*

6%*

0%*

20%*

3. Feeling concerned about their rare health condition because of COVID-19

20%*

13%*

17%*

31%*

14%*

40%*

4. Difficulty accessing medicines

58%

56%

73%

56%

14%

50%

5. Trouble procuring personal protective equipment

55%

78%

50%

56%

71%

17%

6. General impacts

[% of patients impacted in some degree; % of patients that were very or extremely impacted]

95%; 57%

89%; 50%

93%; 45%

100%; 69%

100%; 43%

100%; 83%

7. Negative impact on physical health or wellbeing

36%*

40%*

33%*

38%*

29%*

40%*

8. Negative impact on mental health or well-being

29%*

27%*

13%*

63%*

0%*

60%*

9. Negative impact on social health or well-being

57%*

80%*

38%*

56%*

57%*

80%*

10. Negative financial impact (i.e. loss of income or job)

14%*

0%*

17%*

25%*

29%*

0%*