Cystinosis Ireland will host the 11th biennial International Cystinosis Conference 2020 (ICC 2020) on behalf of Cystinosis Network Europe (CNE), on 10-11 July 2020 at the Royal Marine Hotel, Dun Laoghaire, Co Dublin. The purpose of the ICC 2020 is three-fold:
to present advances in the clinical care of cystinosis patients, the development of new therapeutic treatments and our understanding of the cellular and molecular basis of this disease.
to host a series of targeted clinician-led family-focused panels aimed at sharing knowledge between professionals and those living with cystinosis and their families with a view to improving healthcare outcomes for individuals and families living with this challenging rare disease.
to host a specialist training (CPD) workshop for physiotherapy and logopedic professionals (from Ireland and Europe) focused on treatment strategies to minimise muscle and bone weakness in cystinosis patients (dependant on demand from community). The numbers of scientists, clinicians and families working and living with this ultra-rare disease are small. We expect to attract approximately 200 participants which will include patients and families from the countries formally represented by the CNE (Ireland, UK, Netherlands, Germany, France, Italy, and Spain) and from further afield. The conference is the only one of its kind in Europe and it attracts the participation of world-class academics and clinicians researching in the field of cystinosis. We believe that this conference meets the criteria of a HRB international conference. However, if it does not, we request that the conference be considered under the HRB events category.