Gaucher regional meeting-Together towards improvement of diagnosis, treatment and management, 7-9 June

Gaucher regional meeting-Together towards improvement of diagnosis, treatment and management, 7-9 June

 

REGIONAL MEETING in Struga, Hotel Drim, North Macedonia, 7-9 June, 2019

Gaucher regional meeting

(in cooperation with the Gaucher  organizations from the region)

Participating countries: North Macedonia, Serbia, Croatia, Albania, Bosnia and Herzegovina, Bulgaria, Montenegro, Slovenia (additionally there are invited guests / patient advocates from Ukraine, Romania, EURORDIS representative, IGA representatives, Regional Manager from Czech Republic)

 

07.06.2019 Friday

15.00 – 17.00 – Meeting of organizing and scientific committee

19.00 – 22.00 – Cocktail dinner at the hotel for all participants

Gaucher regional meeting program

Together towards the improvement of diagnosis, treatment, and management

08.06.2019 Saturday

Note: 9.00 – 11.30 First part of the program is together with the scientific meeting

8.00 – 9.00 – Registration of participants

9.00 – 9.40 – Welcome and introductions

  • Venko Filipce, Ministry of Health of R. North Macedonia
  • Den Donchev, Health Insurance Fund of North Macedonia
  • Vesna Aleksovska, President of LIFE WITH CHALLENGES
  • Zoran Guchev, Macedonian society for rare diseases
  • Aleksandar Dimovski, Research center for genetic engineering and biotechnology “Georgi D. Efremov”  at Macedonian Academy for Science and Art

9.50 – 10.30 – Electronic rare disease registry for rare diseases, Program for rare diseases – progress in rare disease in North Macedonia –  D-r Suzana Manevska, Prof. D-r Elena Shukarova, Commission for rare diseases at the Ministry of Health of R. North Macedonia

10.30 – 10.50 – Next-generation sequencing in the routine genetic diagnostics: our experience and lessons learned – Prof. D-r Dijana Plasheska Karanfilska, Research center for genetic engineering and biotechnology “Georgi D. Efremov”  at Macedonian Academy for Science and Art

10.50 – 11.10 – Inherited colorectal cancer syndromes – Prof. D-r Aleksandar Dimovski, Research center for genetic engineering and biotechnology “Georgi D. Efremov”  at Macedonian Academy for Science and Art

11.10 – 11.30 –  Rare disease patient advocates – challenges and recommendations for solutions in rare diseases in the region from the view of the patients – Davor Duboka, Serbia, NORBS

11.30 – 12.00 Coffee break

12.00 – 12 .30 Situation in the region regarding diagnosis, treatment, and management of Gaucher disease. Representatives from the organizations from the different countries will present the situation in 5 minutes each.

  • Serbia
  • Albania
  • Croatia
  • Bosnia and Herzegovina
  • Slovenia
  • Bulgaria
  • Macedonia

12.30 – 12. 45 Regional Manager, Marketa Smockova, International Gaucher Alliance

12.45 – 13.05 Prof. D-r Ivaylo Tournev – Bulgaria, Gaucher disease

13.05 – 13. 25 Prof.  D-r Nadira Duraković, Croatia, Gaucher disease

13.25 – 13.50  Prof. D-r Mojca Žerjav Tanšek, and  Mirjana Zupančič, mag. med. biochem., Slovenia, Biomarkers for Gaucher disease

13.50 – 14.10 Prof. D-r Zlate Stojanoski, Hematology Clinic, North Macedonia, Current situation in management for Gaucher disease

14.05 – 15.00 Lunch break

15.00 – 16.00 Prof. D-r Timothy Cox, UK, Gaucher disease – Oral therapy

16.00 – 16.20  Prof.  D-r Paskal Cullufi, Albania, Gaucher disease

16.20 – 16.40 Prof. D-r Milan Lakočević, Serbia, Clinical trial -what are they, how are they done?

16.40 -17.00 Closing remarks, discussion  conclusions from the day

20.00 – 23.00 Dinner

09.06.2019 Sunday

8.00 – 11.30 Workshops

  • Families
  • Patients
  • Medical professionals

11.30 – 12.00 Coffee break

12.00 – 14.00 Feedback from workshops, discussions, Q&A, evaluation and closing

14.00 – 15.00 Lunch and departure of participants

 

Vesna Aleksovska

President of the Association of citizens for rare diseases,
Life With Challenges – Bitola

Tel: +389 (0)70 70 54 46

e-mail: zivotsopredizvici@gmail.com ; vesna.stojmirova@gmail.com

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