The CNE International Conference 2024, hosted by Cystinosis Foundation UK, took place in Manchester, UK from 25 – 27 July.  It was a fantastic event with more than 270 people attending from 16 countries across the world. You can find the video playback of the plenary sessions at the family conference on our YouTube channel - https://www.youtube.com/@CystinosisNetworkEurope.

The scientific meeting on 25 July heard from our colleagues in the research and healthcare fields presenting their work in areas of cystinosis research and care.  The meeting also heard from experts in topics of relevance to the community but without specific cystinosis focused research at the moment.  Attended by 70 people, the scientific symposium was an opportunity to share ideas and build networks to constantly develop and improve the areas of research of importance and relevance to those living with cystinosis. 

The family conference began on the evening of 25 July with a welcome event where families had the chance to introduce themselves and get a sense of the coming days.  The vibrant spirit of community and warmth were incredible and set the tone for the next two days. Over Friday and Saturday’s conference days, topics for presentations included introductions to cystinosis; updates on research being done and information about possible new therapy options for the future; living well with cystinosis; and presentations from Turkey and South Africa reminding us that not all people with cystinosis have the same and always reliable access to therapies internationally.  Congratulations to Dr Oisin Kavanagh of Newcastle University who won the CNE Family Award for Research Communication at the CNE International Conference 2024, presenting his work on Cystine crystal growth and decay in the context of cystinosis pathogenesis and treatment. 

Two of the highlights people have reported to us since the meeting were the presentation from Jordan Janz on his experience of being part of the UCSD/Cherqui stem cell therapy clinical trial, and the panel of adults with cystinosis sharing their experience of living with this rare disease and how it does and doesn’t impact on their lives.  There were also breakout sessions for people with cystinosis, their family members and loved ones discussing specific areas of importance for them; childcare for our under 12s and a chill out zone for our older teens.  There were fun outings to the Science Museum and Football Museum too, to break up the days too!

The conference closed on Saturday evening with a hoolie (party) where everyone had the chance to celebrate new friendships and the rekindling of older connections.  The highlight of the evening was a ceilí band putting our adventurous dancers through their paces in various fun combinations, with the icing on the cake of a Morris dance from our conference chair, Will Newman, showing just what his bells and handkerchiefs can do!

We thank all our speakers, chairs and hosts for an immense amount of work in the planning and delivery of this incredible weekend.  We absolutely could not have done it without the dedicated and generous support of the team.  Special thanks to the scientific and organising committees who developed the agendas and made sure everything ran exceptionally well.

The recordings of the open sessions, along with translations to Dutch, French, German, Italian, Spanish, Russian and Turkish, can be found at https://www.youtube.com/@CystinosisNetworkEurope.