We welcome you to the 2024 CNE International Cystinosis Conference, the first to take place in the UK since 2014. Diverse, energetic and bursting with character, Manchester is one of the most exciting places to visit in the UK right now where everybody is very warmly welcomed. To join us at the CNE International Conference 2024 you can register to attend and book your travel and accommodation through our dedicated booking form here.

There has been a very high demand for financial assistance to travel to the conference and funding is limited. Please contact us if you require financial support to travel to Manchester.

The one-day Scientific Meeting will take place on Thursday July 25. For more details, please contact us. Please note, the scientific meeting is for professionals only and not part of the family conference.

The Family Conference starts on Thursday evening, July 25, with a welcome reception and a chance to catch up with old friends and start new friendships. Friday and Saturday will be filled with sessions on cystinosis research, open panel discussions and opportunities to connect with both medical professionals and members of our cystinosis community. The scientific chair of the conference is Dr Graham Lipkin, consultant physician and nephrologist at Queen Elizabeth Hospital,Birmingham. An exciting line up of clinical, research and patient experts will present at the conference, including,

• 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;

• Prof Paul Grimm, cystinosis and renal health clinician and researcher;

• Prof Dr Elena Levtchenko, cystinosis clinician and researcher;

• Dr Katharina Hohenfellner, cystinosis clinician and researcher;

• Dr Stephen Jenkins, medical doctor and parent of two children with cystinosis;

• Dr Paul Goodyer, cystinosis clinician and researcher;

• Panel session with adults with cystinosis;

• Parents sharing their knowledge and expertise.

  (More speaker details are on our agenda)

There will be free time on Friday night to explore, network or just relax. The conference concludes on Saturday, July 27, with a farewell dinner and Hoolie (look it up!) where you can let your hair down and soak up the atmosphere.

Complimentary child care will be provided for our younger attendees aged 0-12 years and activities for teenagers 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!

Our venue, The Hilton, Deansgate provides not only fabulous conference facilities but also a range of single, double and family rooms.  All rooms have fridges and there are a number of bookable accessible rooms.

You can register your place and book your travel and accommodation through our dedicated conference booking form.