Table 5.

Reported needs for information about support groups, diseases and research

Question	Number of responses	Yes	No	Don’t Know
		N (%)	N (%)	N(%)
Need for Support Groups
Would you like information about support groups at diagnosis?	28	26 (87%)	1 (3%)	1 (3%)
Was support group information provided at diagnosis?	30	13 (43%)	13 (43%)	4 (13%)
Are you interested in being involved with support groups?	29	17 (57%)	10 (33%)	2 (7%)
Have you searched for support groups overseas?	30	11 (37%)	19 (63%)	0
Have you found a support group in Australia specific to your child’s rare disease?	29	13 (43%)	13 (43%)	3 (10%)
Access to information and research
Do you believe you have been provided with adequate information about your child’s disease?	30	23 (77%)	5 (17%)	2 (7%)
Have you been provided with adequate information about you and your child’s legal and social rights?	29	11 (37%)	12 (40%)	6 (20%)
Have you been provided with adequate information about financial assistance?	29	13 (43%)	13 (43%)	3 (10%)
Are you interested in being kept informed of current research and clinical trials related to your child’s disease?	30	27 (90%)	2 (7%)	1 (3%)
Are you interested in your child participating in relevant research studies?	29	22 (73%)	3 (10%)	4 (13%)