Melanie Funk, the managing director of Eczema Support Australia, says influencing decisions and outcomes in the health system often seems beyond a grassroots organisation.
Ms Funk spoke with BioPharmaDispatch about her own experience as a parent of children with severe eczema and the journey in creating and building the organisation she now leads.
"We believe we are effective but we need a lot more assistance to find ways into the system and to achieve change. We do hit a lot of brick walls and there is very little support in helping to navigate that.
"We have some opportunities like appearing at a hearing of the current parliamentary inquiry into allergy and anaphylaxis. Hopefully, the information we share will get to where it needs to go, but we will also learn through the process as well."
Ms Funk said she "feels frustrated" at what sometimes seems like an underlying inequity in patient representation.
"It seems to me that some groups have connections and can action and access funding quickly. Then you get groups like ours that are very grassroots without those connections. We get a lot of mentoring from a fantastic organisation in Scotland.
"It is frustrating because we have a great need but have zero resources compared to others. It is great they have resources but I guess it means they are more equipped to understand what can be very technical processes and drive change.
"Outcomes should be based on need. I think there needs to be an avenue for organisations like ours to get some real and practical support.
"There is a real sense of urgency because people are contacting us all day, every day, in compete distress and desperate for support. The risk is we burnout in the absence of more resources," she added.