Regional meeting for rare diseases patient advocates, 7-9 June, North Macedonia

Regional meeting for rare diseases patient advocates, 7-9 June, North Macedonia

REGIONAL MEETING ON RARE DISEASES MACEDONIA

7-9 June, 2019, Hotel Drim, Struga, North Macedonia

Regional meeting for rare diseases patient advocates

(in cooperation with the organizations for rare diseases 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 representatives, and in the scientific program lecturers from EU and Adria region countries)

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

 

Program

Regional meeting for rare diseases patient advocates

Bringing together health and social care services for families with rare diseases

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 – 14.00 Public health finance and rare disease drugs – Moderator Davor Duboka

  • 12.00 – 12.50 – Examples from the countries from the region (Serbia, Macedonia, Bulgaria, Croatia, Bosnia and Herzegovina, Albania, Monte Negro)
  • 12.50 – 13.10 Simone Boselli, EURORDIS (European Organization for Rare Diseases)
  • 13.10 – 13.40 Lecture on public health finance – Vladimir Dimkovski
  • 13.40 – 14.00 Discussion and conclusions on different kinds of public funding for rare disease drugs (what is the best solution)

14.00 – 15. 00 Lunch break

15.00 – 16.30 Social services in the region – Moderator Ivana Badnjarevic

  • 15.00 – 15.30 Prof. D-r Rumen Stefanov, Bulgaria, Center for rare diseases
  • 15.30 – 15.50 Vlasta Zmazek, Debra Croatia, Supporting patients, the importance of social service
  • 15.50 – 16.20 Helpline for rare diseases – Croatia (Ivana Hrastar), North Macedonia (Ivana Hadzivanova) and Serbia experience
  • 16.20 – 16.40 Danijela Szili, RET Syndrome Europe, What is there, when treatment is not existent?
  • 16.40 – 17.00 Discussion, closing remarks

19.00 – 22.00 Dinner 

09.06.2019 Sunday

8.00 – 9.30 Conclusions from previous discussions, introduction to the program, short discussion among participants, Moderator Anja Bosilkova Antovska

9.30 – 11.30 HTA,  Clinical trials/Drug development

  • 9.30 – 10.00 Short presentation on drug development and clinical trials
  • 10.00 – 10.30  Do we use HTA in our countries? – Biba Dodeva
  • 10.30 – 11.30  How to get clinical trials in the region?

11.30 – 12.00 Coffee break

12.00 – 14.00 Conclusions, discuss, plans for future regional cooperation under EURORDIS

14.00 – 15.00 Lunch and departure of participants

 This meeting is supported by EURORDIS

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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