REGIONAL MEETING ON RARE DISEASES MACEDONIA

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

Regional meeting for rare diseases patient advocates

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

(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

20.00 – 23.00 – Cocktail dinner at the hotel for all participants

08.06.2019 Saturday

8.00 – 9.00 – Registration of participants

9.00 – 10.10 – Welcome and introductions

• Elizabeta Gjorgievska, First Lady of the Republic of North Macedonia
• Venko Filipce, Minister at Ministry of Health of the Republic of North Macedonia
• Jagoda Shapaska, Vice president of the Health commission at the assembly of the Republic of North Macedonia
• Aleksandar Dimovski, Research center for genetic engineering and biotechnology “Georgi D. Efremov”  at Macedonian Academy for Science and Art
• Zoran Gucev, Macedonian society for rare diseases
• Vesna Aleksovska, President of LIFE WITH CHALLENGES

10.10 – 10.30 – 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

10.30 – 11.00 – Next generation sequencing in the routine genetic diagnostics: our experience and lessons learnt –Dijana Plasheska Karanfilska,  Skopje, Macedonia

11.00 – 11.30 – Inherited colorectal cancer syndromes –  Aleksandar Dimovski,  Skopje, Macedonia

11.30 – 12.00 Coffee break

12.00 – 14.00 Public health finance and rare disease drugs – Moderator Davor Duboka

• 12.00 – 13.10 – Examples from the countries from the region (Serbia, Macedonia, Bulgaria, Croatia, Bosnia and Herzegovina, Albania, Monte Negro)
• 13.10 – 13.30 Simone Boselli, EURORDIS (European Organization for Rare Diseases)
• 13.30 – 13.50 Lecture on public health finance – Vladimir Dimkovski
• 13.50 – 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, Importance of holistic care
• 15.50 – 16.20 Helpline for rare diseases – experience in the region – Croatia (Ivana Hrastar), Republic of North Macedonia (Vesna Aleksovska) and Serbia (Andrea Nenadic)
• 16.20 – 16.40 Danijela Szili, RET Syndrome Europe, What is there, when treatment is not existent?
• 16.40 – 17.00 Discussion, closing remarks

20.00 – 23.00 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 / Organ transplant

• 9.30 – 10.00 Prim Dr Neda Milevska Kostova, International Alliance of Patient Organizations (IAPO), UK, and Studiorum, North Macedonia, Involvement of patients in health research and the role of IAPO
• 10.00 – 10.30  Biba Dodeva, Association against cancer BORKA, North Macedonia, Do we use HTA in our countries?
• 10.30 – 11.30  Pavlinka Nesovska, Baliska, NEFRON, North Macedonia, Organ transplant

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