Our joint International Conference with CNE, held in Manchester in July 2024, was packed full of brilliant presentations by a range of contributors. We are delighted to be able to share with you a range of recorded outputs from what was an incredible event which truly did help us all feel ‘Better Together’. Watch our short promotional video about the conference here.
We are also able to share some Vox Pop clips from conference attendees where we can hear their thoughts on coming to this type of get together. Click on the links to hear these short interviews with Adult with cystinosis; another Adult with cystinosis; a Clinician view; a Researcher view; another Researcher view and an Event overview.
Recordings of each session have been curated onto YouTube so that you can catch up, re-watch or share more widely this valuable content. See our list below for the sessions and the related recordings links.
‘Learning together‘ Presentations:
Prof Elena Letvchenko – An introduction to cystinosis research
Dr Stephen Jenkins – Cystinosis 101 – understanding what cystinosis is
‘Better Treatments’ Presentations:
Prof Herbie Newell – Development of cysteamine prodrug CF10
Dr Jennifer Hollywood – Preclinical studies on combination treatment for cystinosis in cystinotic rats
Prof Paul Goodyer – mRNA research and cystinosis
Prof Anuj Chauhan – Contact lens therapy
Dr David Game – NHS cystinosis hubs
Prof Paul Grimm – Stem cell and gene therapies
Jordan Janz – The experience of the clinical trial and life after
‘Better Health’ Presentations:
Ruth Davis – Introduction to Better Health
Gail Daniels – Living with cystinosis in South Africa
Gϋlnur Gӧkmen – Living with cystinosis in Turkey
Dr Katharina Hohenfellner – IMPACT improvement of motoric abilities in patients with cystinosis
Dr Rachel Bishop – Cystinosis and the eyes
Dr Graham Lipkin – Female fertility and cystinosis
Dr Koenraad Veys – Male fertility and cystinosis
Poster Sessions:
Dr Julian Midgley – Low grip strength correlates with low bone mineral density
Dr Julian Midgley = 2 successive pregnancies for mother with cystinosis and effect on kidney function
Louise Medaer (pres by Prof Rik Gijsbers) – Residual cystine transport activity for spacific CTNS mutations
Louise Medaer (pres by Prof Rik Gijsbers) – Isogenic human cell models to unravel underlying mechanisms of cystinosis myopathy
Annemarie deVreugd – Patient reported outcomes comparing immediate release and delayed release cysteamine
Dr Jesus Mateos Martin – Alpha-2-macroglobulin is overexpressed – implications for new therapeutic targets
Dr Jianhao Zhang – Human induced pluripotent stem cell skeletal muscle model to investigate myopathy
Dr Oisin Kavanagh – Cystine crystal growth and decay in the context of cystinosis pathogenesis and treatment
Dr Sante Princiero Berlingerio – Targeting oxidative stress-driven peroxidation improves podocyte dysfunction in cystinosis