International Conference Update

Mick Swift, Chairman Cystinosis Foundation Ireland

Mick Swift, Cystinosis Foundation Ireland Chairman

Just a few days ago, the 5th International Cystinosis Conference was held in Dublin, Ireland, with around 200 medical professionals,
cystinotics and family members from around the world in attendence. And quite simply, it was an amazing experience.

The fantastically organised event, arranged by the Cystinosis Foundation Ireland, featured a range of presentations covering both
medical issues and personal experiences, discussion sessions, family activities, child care for the younger ones and finished with a barbeque on the final evening.

The conference opened with a presentation by Dr Schneider, one of the longest serving medical practioners in the field of Cystinosis, who charted a history of Cystinosis and its treatment from the early 1960s. Dr Schneider’s presentation started with a stark image from the 1960s of a 3 year old child, who was given no treatment, but ended in hope when showing how much greater prospects are today and how much progress has been made in the last 40 or so years in terms of medical knowledge and the available treatments. Today we face a much brighter future.

On the evening of the last day a summary presentation by Dr Cairns of the Robert Gordon University in Aberdeen, Scotland, highlighted many of the current research projects in progress around the world and showed how much progress has been made. Cystinosis is a rare disorder and can attract little attention, and yet despite this a huge amount of fundraising effort is producing advances in the effectiveness of treatments,

The conference ended with Dr Schneider being presented with a life time achievement award from Jean Holz, of the Cystinosis Foundation USA, who started the first Foundation in the 1960s after discovering her own grandchild suffered from what was then an almost unknown condition.

The theme of the conference was “dreams to reality” and it does feel like some of those dreams are indeed becoming reality. Over the coming weeks, we hope to provide more information about the conference. Please bear with us during this period, as photos and video are edited, notes typed up and reports written on what was a truly memorable occasion.

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