There have been various discussions and notes of interest for a Cystinosis UK gathering in 2011. The Cystinosis Foundation UK is keen to facilitate and help organise a meeting for those of us affected by Cystinosis, to allow us all to share our knowledge and experiences.
Currently, we are unsure where and what form the conference would take, given the location of families (the committee itself is spread from Southern England to Northern Scotland) and uncertainty as to the scale of interest of such a meeting.
Hence, if you would be interested in meeting up in 2011, we would love to hear from you. Please get in touch and let us know your thoughts – would you come, how far could you realistically travel, what would you want to get out of the gathering?
All thoughts and suggestions are readily welcomed, particularly if you are in a position to help organise such a gathering.