Simon Harris (Wicklow, Fine Gael) | Oireachtas source

In fairness to the HSE, running of public health and information campaigns is one of the tasks it does very well. I have seen it do it with the HPV vaccine and many other initiatives. By running a rare disease campaign, we would make other citizens aware of them and we would signpost families to support. One of the requests that has been made to me is to try to bring families together. "Loneliness" might be the wrong word to use but there is a feeling of isolation and not knowing where to turn, and families want to learn from each other. I have committed that my Department and the HSE will work with the advocacy groups and that we have a gathering of families impacted by rare diseases, whether we call it a workshop, a summit or a conference, so they can talk to each other and talk to us and tell us what we need to do. There would also be an element where we could bring clinicians together so that they could talk to, and learn from, each other.

I assure Seanad Éireann and, most importantly, the families and people affected by rare diseases that I intend to have a very busy programme of work between now and 29 February 2020, as we prepare for Rare Disease Day, that will help, in a meaningful way, to raise public awareness, support families, put in place the signposting and information people need when they get a diagnosis as that information is currently lacking and have the work of our national screening committee under way. We have an exciting agenda and I know Members of this House will help with that work and assist us in improving awareness of rare diseases and helping families in what can be extraordinarily difficult journeys.