SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Latest News and Updates Webinar – 27th November 2021

Please join us on Saturday, 27th November at 2pm for our ‘Latest News and Updates’ webinar. We have 3 hours of presentations from 6 speakers, updating you on all the latest treatment and research news, including the ongoing CF10 prodrug study, as well as 2 new research projects that we are co-funding with Cystinosis Ireland. Here’s the full agenda:

  • 14:00 Welcome and Introduction – Tom Kenning, CFUK Trustee
  • 14:10 ‘Overview of Cystinosis and Cystinosis Foundation UK’ – Alex Hutchison, CFUK Trustee
  • 14:30 ‘Cystinosis and the Eye: Looking Through the Crystal Ball’ – Mr Susmito Biswas, Consultant Ophthalmic Surgeon and Paediatric Ophthalmologist, Manchester University NHS Foundation Trust
  • 15:00 ‘Analysis and Exploration of Novel Treatment Approaches for Muscular Disease in Cystinosis’ – Professor Elena Levtchenko, Consultant Paediatric Nephrologist, University Hospitals Leuven, Belgium
  • 15:30 ‘Update on the National Designation Centres for Cystinosis, Research and Treatments’ – Dr David Game, Consultant Nephrologist, Guy’s and St Thomas’ NHS Foundation Trust
  • 16:00 ‘Update on the Development of the Cysteamine Prodrug CF10’ – Professor Herbie Newell CBE, Professor of Drug Development, University of Sunderland
  • 16:30 ‘Treating Ocular Cystinosis by Contact Lenses’ – Professor Anuj Chauhan, Department Head of Chemical and Biological Engineering, Colorado School of Mines, USA
  • 17:00 Closing Remarks – Tom Kenning, CFUK Trustee

We’re co-hosting this event with Metabolic Support UK, as part of their 3-day ‘Rare Thinking Festival’. For more details, and to register to attend, please visit:

https://www.eventbrite.co.uk/e/rare-thinking-festival-2021-tickets-181115640757

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