Cystinosis Ireland held the 9th annual Dublin Cystinosis Workshop and Family Workshop on 13 – 16 April 2023 in Barretstown, Co Kildare. The events also marked our 20th anniversary. The weekend was a huge success with more than 100 members of our community – patients, families, researchers and scientists – coming together to share, learn and have some fun.
The Dublin Cystinosis Workshop is an interactive forum for researchers to share knowledge, spark new ideas and explore new research approaches aimed at better understanding and treating cystinosis. This year’s themes were: 1) Evolution in mechanistic / pathogenic insights in cystinosis, 2) Innovative treatment approaches/ Innovation in treatment and 3) Novel clinical aspects. The Workshop heard from researchers and clinicians from the USA, Canada, New Zealand, UK and Europe (including Ireland) who shared insights and most recent findings as efforts continue to identify new drug targets and effective therapies for cystinosis and ultimately to find a cure for this ultra-rare disease. As part of our poster presentation, Louise Medaer of Katholieke Universiteit Leuven, was awarded the Professor Roz Anderson Memorial Prize for her presentation of her work on S Isogenic human cell models to unravel the underlying mechanism of cystinosis myopathy.
The Family Workshop was fun filled and action packed. Adult patients, parents and caregivers were given the opportunity to engage with our research and clinical colleagues to learn more about areas of importance to the community including therapy development, new areas of research and potential treatments of the future. Our families also engaged with our research community to discuss current research projects and gain a greater understanding of the research process. Our up and coming researchers were challenged to explain their work to a lay audience, who voted on the best presentation. The Cystinosis Ireland Award for Best Oral Presentation to a Non Scientific Audience was awarded to Hayley Chang of the Frederick J. and Marion A Schindler Cognitive Neurophysiology Lab (CNL), University of Rochester School of Medicine and Dentistry, New York, for her work on Development and Characterization of a Cystinosis Knock-Out Mouse Model Using CRISPR/Cas9.
While the adults were learning and sharing their perspective with the scientific attendees, the children were enjoying activities including archery, fishing, canoeing, wall climbing, crazy golf, movie making and prank parties. The sun shone and screens were abandoned for an opportunity to make new friends and try new experiences. The Barretstown team were invaluable in supporting the children to enjoy every moment of the weekend.
Cystinosis Ireland is very grateful to all involved in putting this weekend together: the DCW Scientific Committee, under the guidance of Dr Koenraad Veys; our Support Committee; and our staff, as well as the staff and volunteers of Barretstown.
The Dublin Cystinosis Workshop is an interactive forum for researchers to share new knowledge, spark new ideas and explore new research approaches aimed at better understanding and treating the ultra-rare disease of cystinosis. The 9th Dublin Cystinosis Workshop took place in April 2023.
For details, please click here to see our dedicated meeting webpage.
The DCW is a closed workshop, with participation by invitation or via the call for abstracts.
The Dublin Cystinosis Workshop is a scientifically focused workshop that brings together internationally recognised researchers and clinicians from Ireland, the UK, Europe, North America and New Zealand to share the most recent advances in their respective research endeavours and to look at new ways to develop our understanding of cystinosis as a disease and its treatment.
The Dublin Cystinosis Workshop is the only such scientific workshop in Europe focused on cystinosis.
The aim of the workshop is to share new research developments in the area of cystinosis and to stimulate discussions and collaborations that can convert new ideas into real research that moves the cystinosis research field forward.
Topics presented at the workshop cover the spectrum of basic through to translational research.
In particular, researchers who have been funded by or have applied to Cystinosis Ireland for funding are encouraged to present their research at the workshop.
Early stage researchers and PhD students are strongly encouraged to present their research at the workshop.
As it is a closed meeting (no industry) and participation is by invitation only, researchers are free to present their latest scientific work to colleagues spanning a wide range of cross-cutting disciplines from basic through to translational research.
The next meeting will take place in Ireland in April 2024.
WHO IS THE DUBLIN CYSTINOSIS WORKSHOP FOR?
The workshop is open to all scientists and clinicians working in the field of cystinosis and in related areas of science.
Our previous in-person workshops consisted of approximately 30 scientists/clinicians. We aim to keep the Virtual Workshop small to enable discussion, collaboration and sharing.
Those working in the field of cystinosis are very active in this disease area. However, we also are keen to raise awareness of cystinosis research among researchers with relevant expertise but who are not currently involved in cystinosis research.
We strongly encourage early stage researchers and PhD students to participate.
