Welcome to the registration website for the first European arterial tortuosity syndrome clinic.

Arterial tortuosity syndrome (ATS) is a rare connective tissue disorder, characterized by elongated and tortuous vessels. Other manifestations affect the skin, eyes, lungs and skeleton. ATS is caused by mutations in the SLC2A10 gene, encoding a glucose transporter. Patients carry a defect on both the maternally and paternally inherited copy of the gene. Carriers for only one defective copy of the SLC2A10 gene may show some mild connective tissue manifestations.
This clinic will take place at the Ghent University Hospital, Belgium on of September 10^th – 12^th, 2017. The Ghent University Hospital has a longstanding tradition in connective tissue research, both at the clinical and at the molecular level. In 2006, the Ghent team identified the genetic defect that causes ATS. Since then, we have been gathering information on the clinical status of patients in order to evaluate the clinical manifestations in this disorder and to delineate management guidelines. More recently, we identified some specific clinical aspects in carriers.

During the ATS clinic days you will have the opportunity

• to meet with other families confronted with ATS
• to get in touch with the representatives of the patient advocacy group (A Twist of Fate –ATS)
• to learn about the condition itself
• to contribute to research
• to be informed about your own clinical status.

On Sunday afternoon, we will organize an informative meeting. We reserve Monday and Tuesday for clinical examinations for both carriers and patients. There will be time for informal gathering. More information is included in the informed consent that needs to be completed in order to register.

Please note that the number of participants is limited so do not postpone your registration if you want to participate. Registration is possible until August 15^th, or until all places are taken. All participating family members need to complete this registration separately according to their genetic status. Accommodation will be paid for, travel is at own expense.
Main language will be English but if necessary, summarized information will be communicated in Dutch, French, and Spanish. We will communicate details on the program and accommodation during the second half of August.