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.