First International Cystinosis Conference in East Mediterranean




This year marks a major milestone for the Cystinosis Foundation, as 2009 saw the inauguration of the First Cystinosis Conference in the East Mediterranean, which was hosted October 1-4 at the Dedeman Hotel in Ankara, Turkey.

The outstanding attendance level at this conference was due in major part to the dedicated effort of conference chair Professor Rezan Topaloglu, MD, who welcomed 55 patients and their families on Friday morning. The majority of attendees traveled from various Turkish towns and cities, including Antalya and Istanbul. However some families traveled from as far away as Tehran and the United States to participate in this important conference.
Immediately following Dr. Topaloglu’s warm introduction, Francesco Emma, MD, Head of Pediatric Nephrology and Director of Nephrology Laboratory at Bambino Gesu Children’s Hospital and Research Institute in Rome presented his remarks on the Molecular Basis of Cystinosis to a room full of physicians and parents. Corinne Antignac, MD, Professor of the Department of Genetics at Necker Hospital in Paris and Director of the Inserm Laboratory Unit 574 delivered remarks on Genotype Phenotype Correlation. Dr. Antignac’s research is devoted mainly to the identification of genes involved in rare hereditary renal diseases.

Additional experts in the field of cystinosis research and treatment gave presentations throughout the morning. These included Elena Levtchenko, MD, Associate Professor at the Department of Pediatric Nephrology at the University of Leuven, Belgium and pursues her scientific work at the Radboud University of Nijmegen, the Netherlands. Dr. Levtchenko discussed Renal Disease in Cystinosis.

Craig Langman, MD, elaborated on Muscular Features in Cystinosis. Dr. Langman is Professor of Kidney Diseases at the Feinberg School of Medicine, Northwestern University, Head of Kidney Diseases at the Children’s Memorial Hospital and Director of DaVita Children’s Dialysis Center in Chicago.

While physicians and parents were hearing from these and other international experts, patients were enjoying physical activity exercises in another location in the hotel. After the lunch break, patients and families enjoyed a field trip to Anitkabir, the mausoleum of Kemal Ataturk, the founder and first President of the Turkish Republic. Upon their return to the hotel Friday afternoon, families enjoyed a special session dedicated to meeting one another as well as meeting medical professionals.

During this special session Jessica Jondle, member of the Cystinosis Foundation, gave a thoughtful presentation on how she copes with cystinosis. One father in the audience was so moved by her inspirational words that he stood up and voiced his interest in organizing a patient advocacy group in Turkey. It is hoped that individuals and families in Turkey will move forward and organize a support group.

In addition to providing the latest developments in cystinosis research and ongoing education for both the medical community and families, another goal of international cystinosis congresses is to galvanize those affected by cystinosis to come together and create support and patient advocacy groups. As always, the Cystinosis Foundation is available to help in these efforts.

Day Two of the First International Cystinosis Conference in the East

Mediterranean began with a talk by Elena Levtchenko MD, on Treatment of Cystinosis and Complications, followed by Professor Rezan Topaloglu MD, discussing the Long-term Complications of Cystinosis. A very important aspect of this conference was the opportunity for parents to understand from medical experts the importance of maintaining compliance with the medication schedule. This message was repeatedly emphasized throughout the conference.

Dr. Mehmet Cem Mocan, instructor of Ophthalmology at Hacettepe University in Ankara, addressed the topic of Ophthalmologic Features of Cystinosis.

Dr. Mocan was followed by Sibel Pehlivan, Ph.D. who is a member of the Faculty of Pharmacy, Department of Pharmaceutical Technology at Hacettepe University, Ankara. Dr. Pehlivan spoke on New Horizons in Treatment of Eye Diseases. Regional issues and experiences were also discussed by additional panelists. Neveen Soliman, MD, Professor of Pediatrics at Cairo University in Egypt delivered remarks about the diagnosis and management of cystinosis in Egypt. Dr. Soliman is the Coordinator for the Egyptian Group for Orphan Renal Diseases.

Not only does this conferences mark the first time medical professionals within Turkey have come together to share information and observations about cystinosis, it has also been the first opportunity for families in the East Mediterranean affected by cystinosis to meet one another in a relaxed and informal setting. This has been an important step forward in spreading knowledge about cystinosis and extending our international community. Sponsors of the First International Cystinosis Conference in East Mediterranean include Orphan Europe, Gocuk Nephrology Dernegi and the Cystinosis Foundation. In order to continue to serve the needs of patients and families in this region, planning is underway to host the Second International Cystinosis Conference in the East Mediterranean in 2011.

Back to Conferences

 Back to HomePage