Register here for the Rare Disease Forum, taking place Wednesday 8th June at 6.30pm.

This event is the second ever meeting of the Rare Disease Forum and the first to focus on the topic of research. On behalf of the Steering Group, this event is being led by Health Research Charities Ireland (HRCI).

Who should attend?

The meeting is open to all people living with a rare disease, carers and patient organisations, as well people working in rare diseases such as health & social care professionals, researchers, industry representatives, funders, policy makers, politicians etc. In short, everyone with an interest in rare diseases is very welcome.

What will I hear about at the meeting?

You will hear talks from a number of patient representatives and researchers about what is happening with rare disease research in Ireland and in Europe. In particular, you will hear about efforts to increase research into social care and quality of life, a new rare disease clinical trial network and research partnerships north and south of the border. The talks will focus on rare diseases broadly, rather than on specific conditions. We’ll update this page soon with a more in-depth agenda.

Will I get my questions answered?

We can’t pretend that online meetings are quite the same as in-person meetings but you will be able to ask questions through the chat box. As it is an evening event, we want to keep it short, so we may not get to all questions but we will try. It’s important to note that it won’t be possible to answer clinical questions or questions about an individual’s care.

How will I attend the meeting?

When you register, you will be sent a Zoom link to log on to the meeting at 6:30pm on June 8th. Your microphone will be muted but we encourage people to have their camera on, so that it feels a bit more like an in-person meeting (although this is definitely not essential).