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Table 2 Goals of RDPOs

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

Goala

Number of RDPOs (per cent of 61 survey respondents)b

To raise community awareness and knowledge of the disease

59 (96.7)

To provide information or education to patients and/or their families

59 (96.7)

To provide information or education to health professionals

50 (82.0)

To provide social support or networking opportunities for patients and/or their families

55 (90.2)

To provide services (for example, respite care), financial assistance, or other resources (for example, equipment) to patients and/or their families

25 (41.0)

To support or promote research on the disease

56 (91.8)

To advocate to government or other authorities for research funding, other research resources, or changes in regulations relating to research

36 (59.0)

To advocate to government or other authorities on other matters (for example, access to services or existing therapies)

41 (67.2)

  1. aThe code set for this question was based on the website review, which revealed that RDPOs’ statements of goals (or missions, priorities and so on) could be categorised according to the eight statements listed in the table
  2. bTotals equal more than 100 % because respondents could choose more than answer