SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Watch back elements of our CNE International Conference 2024 – Better Together.

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.

Promotional Video

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 togetherPresentations:

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 rat

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 

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