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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