Latest News

2016 Audited Accounts finalised

You can view our 2016 audited Accounts on our "Who Are We" page Find out more...

Thank you!

To the Tea + Toast Theatre Company for donating tonight's performance of "Fizzy Drinks with two Straws" to us for cystinosis research. Find out more...

VHI Women's Mini Marathon 2017

Calling all the ladies out there! Find out more...

First Seedcorn Funding Programme Launched.

In collaboration with the Cystinosis Research Network and the Cystinosis Foundation UK Find out more...

The Second Annual Dublin Cystinosis Family Workshop will be taking place February 23-25th 2017 at the Royal Marine Hotel in Dun Laoghaire. Please contact us for more details. Registration Form Family.pdf

The Second Cystinosis Scientific Workshop will be held in The Pillo Hotel, Ashbourne on 1/2nd April 2016. We are expecting participants from Ireland, Europe, U.S.A. and beyond to share important information which will help all those living with cystinosis.

The 9th International Cystinosis Conference will be held in Valencia Spain, 30th June - 3rd July 2016. Details here

Cystinosis Ireland and the Health Research Board jointly sponsored a workshop on 20-22 June 2014 in Dublin 

The purpose of the meeting was to get together a small group of researchers for a short workshop (1 evening and 1 day) to discuss their research activities in cystinosis as well as to consider the outlook and opportunities for research in a European context over the next five years.

The workshop sessions was held in the Irish Stock Exchange Buildings, Anglesea St., Dublin,

In addition to the invited researchers, a small number of clinicians who treat cystinosis patients in Ireland were invited. Members of the Cystinosis Foundation Ireland Scientific Advisory Board were also in attendance. 

The 8th International Cystinosis Conference was held over the weekend of 24th-26th July 2014 at the Marriott Renaissance Hotel in Manchester jointly hosted by the Cystinosis Foundation UK and the Cystinosis Foundation USA.

The abstract can be viewed here

The 7th International Cystinosis Congress was held at the Marriott Charles de Gaulle, Paris 28th June - 1st July 2012.

This conference was organised by the Cystinosis Foundation (USA) and they have now produced a summary of the weekend here

Some of the researchers we fund travelled to this conference, as did some members of our Executive.  It was a very well organised and attended conference with approximately 250 delegates there.  The Cystinosis Foundation USA will have a report up shortly.  In the meantime here a few pictures we took over the weekend there.

Our inaugural research symposium held at the Conway Institute, U.C.D. on 13th October 2011 was a great success. 

The Abstract booklet is available


Photos of the afternoon here

Many thanks to our sponsors for the afternoon, H.R.B. and Orphan Europe.

The 6th International Cystinosis Conference took place at the Village GeTur, Lignanno Sabbiadoro 23-26 September 2010.

We would very much like to thank the Cystinosis Foundation USA and the Italian Cystinosis Group for all the hard work they put into the planning of the weekend.


/_files/2010Conf Prog.pdf 


The Fifth International Cystinosis Conference 2008

Cystinosis Foundation Ireland was honoured to host the 5th International Cystinosis Conference in Dublin from June 26th to 28th 2008. As a Foundation this was a huge undertaking for us and the committee worked for over a year to as we looked forward to welcoming all our international delegates, families and professionals. We had over 220 delegates from 20 countries represented and the conference provided a great opportunity for sharing of research information and networking between Doctors, Researchers and families.

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