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The International Cystinosis Congress is run bi-annually by the Cystinosis Foundation for healthcare professionals (HCPs), cystinosis patients and the patients’ families or carers.

The congress aims to create an environment that allows the sharing of best practice including education, different treatments and personal experiences of the disease from both a HCP and patient perspective. The objective is to find new ways of advancing current methods in this rare orphan disease.

Cystinosis Foundation worked alongside Ashfield Meetings & Events to create an event that not only worked as a congress, but that also focused on the patients, creating a protective environment with an emphasis on social interactions and networking.

The event included:

  • Attendees and patients from seven countries different countries
  • A nanny service to allow the families and carers of the patients time to involve and immerse themselves in learning and sharing experiences
  • Bespoke children’s menus
  • On-site security protocols to ensure the safety of the children
  • Team building activities throughout the weekend
  • Youth leaders running activities for the children whilst meetings take place
  • Evening walking tour of Manchester, accompanied by five tour guides
  • Translators for multiple languages
  • Individual sessions for HCPs and the patients with their families, as well as sessions which included everyone together
  • New treatment research presentations
  • Farewell gala dinner, impromptu silent auction, unveiling of the group team build artwork and disco

8th International Cystinosis Congress

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