SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

CNE Conference Update – December 2023

We are looking forward with excitement to the CNE International Conference in Manchester that we are hosting on 26 and 27 July 2024. The conference will be based at a central Manchester hotel and we are delighted to announce that confirmed speakers include:

• – Jordan Janz, adult with cystinosis and first participant in Dr Stephanie Cherqui’s gene therapy trial
• – Prof Dr Elena Levtchenko, Emma Children’s Hospital, Amsterdam UMC – international expert clinician and researcher in cystinosis
• – Prof Herbie Newell, Professor of Drug Development at the University of Sunderland, UK – developing a new prodrug, CF10, for cystinosis
• – Prof Anuj Chauhan, Professor Chemical and Biological Engineering at the Colorado School of Mines, US – contact lens drug delivery for cystinosis
• – Dr Katharina Hohenfellner, RoMed Clinic, Germany – clinician and researcher in cystinosis and coordinator of an expert centre in cystinosis
• – Dr Paul Grimm, Professor of Pediatrics, Medical Director, Pediatric Kidney Transplant Program, Stanford , US – clinician and researcher in cystinosis with specialism in kidney health and transplant

As well as expert speakers giving updates on research and developments in the understanding and potential treatment of cystinosis, we will have sessions for families, parents, teenagers and adults with cystinosis. We will also offer supervised childcare for the younger attendees and simultaneous translation from English to Dutch, French, German, Italian, Russian, Spanish and Turkish.

The booking portal will open in January where you will be able to book for the conference and accommodation. Our conference booking partner will also be able to help with travel options.

Best wishes to all in our community for a safe and happy festive season, and a bright new year,

Will Newman
On behalf of the organising committee

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