Upcoming Conferences
Written by ValerieH, published 8 months ago.
The Cystinosis Foundation is pleased to host the 7th International Cystinosis Congress in France during the summer of 2012 and the 1st International Cystinosis Congress in Brazil in October, 2012.
Keeping in accordance with our history of hosting unique and highly regarded conferences that offer meaningful experiences for the entire family, the 2012 gatherings are sure to be memorable experiences for our international community. Specific details regarding the venue locations and dates will be announced on our web site and the Rare Disease Communities web site in the coming months.
As part of our mission to educate families, individuals and medical professionals about this rare disease, and to provide emotional support for affected individuals, the Cystinosis Foundation innovatively created this unique conference format and, after 16 years of hosting in the United States, expanded internationally in 2000.
"Special in this field, this conference is truly unique and has been a huge success. It doesn't make a difference where you live in the world: Germany, France, United Kingdom, The Netherlands, Denmark, South Africa, Italy, Ireland, Australia, or...a lot of the experiences are the same," points out Marjolein Bos, who attended last year's congress with 12 individuals from The Netherlands. The Cystinosis Foundation hosts the European conference in a different nation located in Europe on a bi-annual basis.
An integral component of this program is the session for medical professionals, which serves as a forum for educating the international nephrology medical community about cystinosis. Everyone enjoys the opportunity to ask questions of the world's experts on this rare disease in a relaxed and informal setting.
There is fun for the children as well. Last year in Italy Karen Ritchie and child care providers were enthusiastically supported by Enza Pedalino, Angie Marzullo and four volunteers from Orphan-Europe who played games with the children and oversee their art projects. Don Hammond played guitar and introduced teenagers to NC Quest, An Educational Party board game.
This fun game is designed on the model of Trivial Pursuit, but instead of trivia, questions are centered on biology and cystinosis in particular. You may order your complimentary NC Quest from the Cystinosis Foundation now by emailing vhotz@cystinosis.com Parents may attend all sessions, knowing their child is well cared for, although we do require parents to administer all medications to their child throughout the day.
Families will hear numerous presentations from leading researchers, including an update on the status of RP103, Raptor Pharmaceutical’s delayed-release form of cysteamine which is administered every 12 hours and a treatment for cystinosis in the eyes, Cystaran, the compound developed by Sigma-Tau Pharmaceutical awaiting final approval by the Food and Drug Administration in the United States. Simultaneous translation will be available.
The Cystinosis Foundation is partnering with AIRG France and Cystinose France to host the 7th International Cystinosis Congress and Brasil Cystinosis Support to host the 1st International Cystinosis Congress in South America. Please check our web site for updates at
www.cystinosisfoundation.org
Written by ValerieH, published 8 months ago.
One comment for «Upcoming Conferences»
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When will we know the exact date of the cystinosis in France Summer Conference 2012?