Join us in Dublin at Cilia2024 for this important networking event within the renal ciliopathies space!

Learn more about the latest projects and programmes, as well as opportunities to get involved in improving diagnosis and care for all renal ciliopathies, and supporting innovative therapies. Funded by the UKRI Medical Research Council and National Institute for Health Research, CILIAREN is a node within the recently established Rare Disease Research Platform, a major UK investment to improve diagnoses and management of patients and drive innovation for treatments for rare disease, under which we focus on renal ciliopathies. Within Europe, the recently launched and EU-funded TheRaCil has similar goals to better diagnose and stratify patients with renal ciliopathies, and accelerate therapy development. Central to all of these are the patients and patient advocates, with challenges on how we ensure we champion renal ciliopathies, from rare to ultra-rare, especially now without the much missed Tess Harris.

Please join us for a working lunch discussion on what these programmes mean, what opportunities exist and how we can work together as a community. We hope you can join the discussions within this important space.

Please register for logistics/catering by August 21st (capacity for the meeting room is capped at 70) https://forms.gle/Yty67WPKhuReQeLa6

Place: Cedar/Cypress Suite, UCD O’Reilly Hall, Dublin, EI

Programme:

13:00 – 13:10 Arrival, lunch and networking

13:10 – 13:15 Pleasantine Mill

13:15 – 13:25 John Sayer, CILIAREN and UK rare disease landscape

13:25 – 13:35 Sophie Saunier, TheRaCil and European renal ciliopathies landscape

13:35 – 13:45 Audrey Hughes PPIE building partnerships across Europe

13:45 - 13:55 Discussion: opportunities, collaborations and challenges