CNE International Conference 2024

Cystinosis Network Europe and Cystinosis Foundation UK are delighted to announce the 2024 International Conference is open for registrations! You can find out more on our dedicated webpage and register your place on our booking form.

We are looking forward to an exciting and interesting family conference, beginning with a welcome session on the evening of 25th July and full day sessions on 26th and 27th July, finishing with a fun filled hoolie! Some of our key speakers include:

Jordan Janz, the first patient on Dr Stephanie Cherqui’s gene therapy clinical trial;

Prof Herbie Newell, principle investigator of the CF10 drug development project at Sunderland University;

Dr David Game, local Principal Investigator for RaDaR, the national registry for rare renal diseases in UK and NHS lead on rare disease treatment hubs;

Dr Paul Grimm, cystinosis and renal health clinician and researcher.

The conference will offer complimentary child care for our younger attendees aged 0-12 years and activities for teenagers and adults are provided so you can bring all the family. Family accommodation is also subsidised by the organisers to support families attending.

Translation will be provided from English to Dutch, French, German, Italian, Russian, Spanish and Turkish.

The family meeting will have sessions including introductions to what cystinosis is; living well with cystinosis; updates on research and developments in therapies; and lots of opportunities to ask questions and learn more!

Please note, financial travel grants are also available to families on a request basis. To find out more, please email

We look forward to seeing you in July!

What is Cystinosis?

Cystinosis is an exceptionally rare condition characterised by the crystallisation of the amino acid cystine in various body organs and muscles. Cystinosis is an inherited disease occurring in about 1 in 200,000 births within developed countries.

With better understanding, earlier diagnosis and improved treatments, people with cystinosis are able to lead a long, full life. It is the Foundation's aim to strive for continued improvements, by informing and sharing across researchers and the cystinosis community.

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