Program for the First Balkan Meeting of Families with Alport Syndrome and Experts

Ohrid, Macedonia, 31 August-2 September 2018

Organizational board: Prof. D-r Velibor Tasic, Vesna Aleksovska, Gordana Loleska

31 August, Friday, 2018

• Arrival of participants until 13.00
• 13.00 – 14.00 – Lunch
• 15.00 – 15.10 Vesna Aleksovska, Gordana Loleska: Opening Remarks
• 15.10 – 15.30 Venko Filipce, Minister of Health and Jovan Stojanoski, Mayor of Ohrid
• 15.30 – 15.50 Liesbeth Siderius: Rare Diseases in low economy countries – challenges and opportunities
• 15.50 – 16.00 Vesna Aleksovska: Rare diseases in R. Macedonia – Progress of the rare disease program from 2009 to 2018
• 16.00 – 16.30 Aleksandra Jancevska, Velibor Tasic, Liljana Tasevska R’mus: Basic on genetic testing
• 16.30 – 17.00 – Coffee break
• 17.00 – 17.40 Julia Höfele– Genetics of Alport syndrome – Molecular results of Macedonian patients
• 17.40 – 18.00 Patrick Walker Alport UK: Alport Syndrome Alliance: effort to build an international collaborative
• 18.00 – 18.20 – Coffee break
• 18.20 – 18.40 Dusan Miljkovic: Alport syndrome in Serbia
• 18.40 – 19.00 Danko Milosevic: Alport syndrome in Croatia
• 19.30 – 21.30 – Dinner

1 September, Saturday, 2018

• 8.00 – 9.00 – Breakfast
• 9.00 – 9.30 – Meet the expert Julia Hoefele: Diagnostic challenges in Alport syndrome
• 9.30 – 10.00 Meet the expert Liesbeth Siderius: How patients’ organization work in West Europe
• 10.00 – 10.10 Meet the expert Velibor Tasic: Is familiar benign hematuria indeed benign?
• 10.10 – 10.40 Meet the expert Tatjana Zorcec: Psycological support to Alport families
• 10.40 – 11.00 Ana Momirovska: Overview of first Alport results using molecular testing in Republic of Macedonia
• 11.00 – 11.30 – Coffee break
• 11.30 – 11.50 Nevenka Laban Guceva: Ophtalmologic changes in patients with Alport syndrome.
• 11.50 – 12.10 Irena Duma: Audiologic changes in Alport Syndrome
• 12.10 – 12.30 Vojislav Radulov: Hearing devices (technical aspects)
• 12.30 – 13.00 Tatjana Zorcec: Psychological profile of children with chronic kidney disease and Alport syndrome
• 14.00 – 14.30 – Lunch
• 14.30 – 14.50 Danka Pokrajac : Alport syndrome in Bosnia and Herzegovina
• 14.50 – 15.10 Velibor Tasic: Alport syndrome in Macedonia
• 15.10 – 15.30 Galija Zlatanova: Alport syndrome in Bulgaria
• 15.30 – 15.45 Jovan Neskovski: Report on a large Alport pedigree from Gostivar
• 15.45 – 16.10 Irena Busljetic: Transplantation in Alport syndrome
• 16.10 – 16.30 Association NEFRON: Importance of organ donation
• 16.30 – 17.00 – Coffee break
• 17.00 – 17.20 Personal story 1: Our experience on participation in the Early Protect Study
• 17.20 – 17.40 Personal story 2: After loss of the kidney graft
• 17.40 – 18.00 Personal story 3: Successful kidney transplantation

2 September, Sunday, 2018

• 8.00 – 9.00 – Breakfast
• 9.00 – 9.20 – Gordana Loleska: Clinical trials and orphan drugs for Alport’s – are they available for Macedonian patients
• 9.20-9.40 Natasa Stajic& Jovana Punik _ Alport syndrome-our experience at the Institute for Mother and Child Health Belgrade
• 9.40 –-10.00 Gordana Lomic: Alport syndrome-our experience at the University Children’s Hosptal, Belgrade
• 10.00 – 11.00 All participants: Conclusions and vision for the future
• 11.00 – departure of participants