The 6th International Cystinosis Conference

Will take place at Lignano Sabbiadoro, Italy

 at the Village GeTur

More details

Programme Details & Registration

We were honoured that Mary Harney, TD, Minister for Health and Children addressed our conference especially as Minister Harney launched Cystinosis Foundation Ireland in 2003.

The theme for the conference was ‘from dreams to reality’.  Years ago, those living with cystinosis and their families had many dreams.  Today many of those dreams have become reality.  A treatment exits that, while far from perfect, offers those living with cystinosis a chance of a better life.  Renal transplant has meant that what was once a fatal condition at a young age is no longer in that category.  The discovery of the cystinosis gene brought hope and motivation.  It is the courage of the adults with cystinosis, many of whom joined us at the conference, through their participation in research that has realized many of these dreams. The dreams continue as does the research.  When the first International Cystinosis Conference took place ten years ago, no original research abstracts were received.  For the conference in 2008, 20 abstracts of original research into cystinosis were submitted.  For a condition that has an incidence of 1 in 250,000, this is a lot of dreaming.   Much of this research is funded by organizations’ that have at their core parents, patients, families and friends.  Scientific expertise is provided by many of the world experts most of whom joined us in Dublin.  The motivation for the immense effort involved in fundraising is the vision of those dreams that can become reality.

As always, the International Cystinosis Conference was wide ranging.  As well as welcoming the scientists, clinicians, multi-disciplinary teams and other professionals, we were delighted to welcome all the families, friends and those living with cystinosis. The scientific program was overseen by an international team chaired by Dr William van’t Hoff, UK and included Dr Atif Awan, Ireland, Dr Francesco Emma, Italy, Dr William Gahl, USA, Dr Elena Levtchenko, Dr Patrick Niaudet, France.

The comprehensive programme included high-level scientific symposiums, family sessions and special sessions for children and for young people.  Friendship and support is vital when dealing with a rare condition.  Time was also been set aside for networking opportunities and for the renewal of old friendships and the forging of new ones.  The conference also saw the creation of an onsite art installation which was created by a group of students from DIT with help from many of the attendees.

Our work at Cystinosis Foundation Ireland continues and we were delighted to announce at the Conference our commitment to fund two research projects in Ireland, one at UCC which is funded jointly with the HRB/MRCG Joint Funding Scheme and a project at UCD.  Along with these Irish projects we are also funding research projects in Stanford University, California (also joint funded by HRB/MRCG) and Robert Gordon University, Scotland.  This brings to four the number of projects currently funded by Cystinosis Foundation Ireland.

We are delighted to be able to invest in research in Ireland at this time and to help to build out the research capability here through our extensive range of contacts internationally.

We would like to thank the International Scientific Committee whose help was invaluable in planning the conference:

• Dr William van't Hoff (Chair) UK
• Dr Atif Awan (Ireland)
• Dr Francesco Emma (Italy)
• Dr William Gahl (USA)
• Dr Elena Levtchenko (Belgium)
• Dr Patrick Niaudet (France)

Cystinosis Foundation Ireland would also like to thank our 2008 Conference Supporters:

• AIRG France
• Orphan Europe
• Sigma-tau
• Irish Kidney Association
• Irish Stock Exchange
• Ulster Bank
• Abbey Capital
• McElroy's Pharmacy