Table 1 Size and resources of surveyed Australian rare disease patient organisations
Number of RDPOs (per cent of 61 survey respondents) | Valid per cent | |
|---|---|---|
Geographical coverage | ||
Specific states or territoriesa | 19 (31.1) | 31.7 |
Whole of Australiab | 30 (49.2) | 50.0 |
Australasian | 9 (14.8) | 15.0 |
Australian arm of international organisation | 2 (3.3) | 3.3 |
Not stated | 1 (1.6) | - |
Number of members | ||
60 or fewer | 17 (27.9) | 32.1 |
61 – 300 | 21 (34.4) | 39.6 |
More than 300 | 15 (24.6) | 28.3 |
Not stated | 8 (13.1) | - |
Number of paid employees | ||
No paid employees | 32 (52.5) | 56.1 |
1–2 | 8 (13.1) | 14.0 |
3–5 | 6 (9.8) | 10.5 |
6–15 | 7 (11.4) | 12.3 |
More than 15 | 4 (6.6) | 7.0 |
Not stated | 4 (6.6) | - |
Total budget in 2012–13 | ||
$0 to $10,000 | 15 (24.6) | 27.3 |
$10,000 to $50,000 | 9 (14.8) | 16.4 |
$50,000 to $100,000 | 5 (8.2) | 9.1 |
$100,000 to $200,000 | 10 (16.4) | 18.2 |
$200,000 to $500,000 | 5 (8.2) | 9.1 |
$500,000 to $1,000,000 | 2 (3.3) | 3.6 |
Over $1,000,000 | 9 (14.8) | 16.4 |
Don’t know/not stated | 6 (9.8) | - |
Sources of funding in 2012–13 c | ||
Membership fees | 35 (57.4) | 58.3 |
Donations and bequests | 48 (78.7) | 80.0 |
Fundraising events | 46 (75.4) | 76.7 |
Government | 16 (26.2) | 26.7 |
Industry pharma or biotech company | 12 (19.7) | 20.0 |
Philanthropic organisations | 19 (31.1) | 31.7 |
Community or business sponsors | 21 (34.4) | 35.0 |
No funding | 1 (1.6) | 1.7 |
Funded by founder | 2 (3.3) | 3.3 |
Other/don’t know | 2 (3.3) | 3.3 |