The 7th International Cystinosis Conference, Roissy, France



Downtown Roissy, France

The 7th International Cystinosis Conference was held in Roissy, France, June 28 - July 1, 2012.  Roissy is a beautiful little city just outside of Paris, France.  Just a few minutes from Charles De Gaulle airport.


Entrance to the Marriott





The conference hosted 265 attendees and the Roissy Marriott was the venue for the conference, it is a beautiful hotel, with a very nice area for the attendee's to sit and socialize with each other.  The Marriott provided free transportation to and from the airport and train station for those that wanted to visit Paris.








Children at Disneyland ParisThe over 40 children in attendance enjoyed a variety of activities during the conference that were planned by Laetitia Lepoix, president of Cystinoise and Francois Couppey, AIRG France.  Francois Couppey worked very hard to secure FREE tickets to Euro Disney for the children and adult escorts. The children's breakout room had many things for them to do, including a lady that entertained the kids making balloons, and across the street was a beautiful park with climbing equipment and slides that they played on.










Welcome ReceptionBalloon Animals were made for children at the receptionThursday evening was the Welcome Reception, and for those that arrived early, we shared beer, wine, soft drinks, and snacks. Everyone mingled.  Those families that have been to previous conferences renewed old friendships, those that were new to the conference were meeting and making new friends.  There was plenty of entertainment, and of course the kids became fast friends and took over the hotel.  We want to thank Raptor for the fabulous Welcome Reception.





Friday morning started with a warm welcome from Patrick Niaudet, Scientific Advisor; Daniel Renault, President AIRG, and Valerie Hotz, Executive Director, Cystinosis Foundation, Inc. Jerry Braza was the keynote speaker.  He elaborated on the value of developing a positive outlook while coping with cystinosis and the importance of building good relationships that help sustain us." We were the first to see the newest professionally created video of The Cystinosis Foundation's Celebrity Spokesperson, Abby Riggs  Over the next two and a half days we heard from speakers from all over the world: Dr. Langman, Dr. Gahl,  Dr. Trauner, Dr. Del Monte, and Dr. Dohil, USA; Dr. Antignac, Dr. Cherqui, Dr. Cochat, Dr. Servais, Dr. Deschenes, and Dr. Niaudet, France; Dr. Levtchenko, Belgium; Dr. Topaloglu, Turkey; Dr. Emma, Italy; Dr. Webb, U.K.  Betty Cabrera, from the University of California, San Diego, where she coordinates Cystinosis clinical trials, and as curator of the "Cure Cystinosis International Registry" (a collaboration between The Cystinosis Foundation and the Cystinosis Research Foundation.  If you have not registered with the CCIR, we encourage you to do so by clicking on this link.  The kids received a free trip to Disneyland Paris, Francois Couppey worked with Disneyland Paris to provide and afternoon at the park.



Dr. Gahl at ICC 2012Afternoon breakout session included a workshop for Grandparents and extended family and a patient panel discussing "Living With Cystinosis".  Feedback was excellent and participants were many.  In the Plenary Sessions, topics ranged from "50 Years of Cystinosis Research" to an Announcement by Dr. Cherqui the Bone Marrow/Gene Therapy study is about to begin.  Just a note:  The Cystinosis Foundation, Inc. here in the USA, was the first to recognize the work being done in France.  The Foundation approved funding to Dr. Antignac at Necker Hospital in Paris, France.  Dr. Antiqnac's group identified the gene involved in Cystinosis, the CTNS gene. Dr. Cherqui assisted with discovery of the gene, and brought that discovery to the U.S. along with the Cystinosis mouse, and started the project "Stem cells and gene therapy for cystinosis" at the Scripps Research Institute.  She has demonstrated that transplanting bone marrow stem cells leads to the long-term preservation of the kidney in Ctns mice.


Throughout Saturday the most knowledgeable doctors and researchers came to the podium to speak on an arrayDr. Corinne Antignac at ICC 2012 of topics important to the families and patients attending the conference.  Dr. Trauner spoke on "Muscle Wasting" and "Neurological complications in cystinosis".  Dr. Dohil spoke on "Gastro-intestinal problems. Dr. Niaudet discussed :Renal Transplatation". Dr. Del Monte talk to us about "Ocular manifestations in cystinosis", and "New cysteamine collyriums".  We were updated on Cystadrops, Sigma-Tau is just waiting for FDA approval of manufacturing to provided patients in the U.S. with the eye drops.  There were a number of workshops breakout sessions Children\Parents, adults, and young adult patients.



The Band "ECHOES" at the ICC 2012Saturday evening, Cystinose France was gracious enough to provide the entertainment, a band named "ECHOES" played for all of the attendees and everyone had a wonderful time listening and dancing to the sounds of "ECHOES" a partner of Cystinose France.  During the conference guests were invited to share their thoughts and hopes for the future.  This project culminated in the production of the short video by Raptor, entitled "My View", which Raptor generously donated to the Cystinosis Foundation.  We all enjoyed watching the video on Saturday night.  As the band ECHOES played, a conga line of parents and children danced through the room and across the foyer with much laughter.



Sunday was a half a day of Question and Answer sessions on topics like "Neurological and Psychological problems" (Dr. Trauner); "Gastro-intestinal problems, feeding and growing" (Dr. Dohil); "Preserving renal function" (Dr. Langman).  The conference was concluded by noon, with closing remarks from Dr. Niaudet, Daniel Renault, and Karen Ritchie (Board Member, Cystinosis Foundation, Inc.) expressingICC 2012 Saturday Night Dance appreciation to all of the Speakers, Attendees, and to all of our partners, that helped to make this one of the most successful International Conferences we have had. 



The Cystinosis Foundation, Inc., would like to thank our partners for being committed to our community and for helping us to bring families, doctors, researchers, and professionals from all over the world together.  For supporting this conference and helping us to make it one of the most successful and highly attended Conferences in the nearly 30 years that we have brought support to the families and patients with Cystinosis.




AIRG France; Cystinose France; Raptor Pharmaceuticals; Orphan Europe; Sigma-Tau Pharmaceuticals;

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