Dr. Ciara Martin:

Aside from the drugs, the question is how we support families and people who are living with rare diseases. With the national rare disease plan there has been a lot of progress made in supporting families. With the setting up of the National Rare Diseases Office there are supports for families. By reaching out to the European networks, we are able to offer advice and counselling to people who need it. We are able to put them in touch with the right specialists at the right time so that people know where to go for the right information. The setting up of the 18 ERNs means we will have centres of excellence in Ireland where we can cohort databases, get established with research and be able to offer advice on treatment protocols. That is very significant for families who need to be able to reach out and know that, although their family member has something rare, they are not alone and that someone knows about it and can give some information on the medication. We are all used to going on various platforms like Google just to know what is out there, and for someone with a rare disease to go out and not find anything is very difficult. The National Rare Diseases Office has done a lot of work in that respect. It was part of the plan. We acknowledge there are some parts of the plan that need to be developed past 2018, but the feedback on the initial part is very positive.