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Table 1 Size and resources of surveyed Australian rare disease patient organisations

From: The involvement of patient organisations in rare disease research: a mixed methods study in Australia

  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
  1. aIncludes state-based RDPOs of RDPO federations with separate national body
  2. bIncludes national RDPOs with separate state organisations
  3. cTotals exceed 100 % as respondents could choose more than one response. One respondent did not complete the section on organisational details