Dear collaborators,
The Association of citizens for rare diseases “Life With Challenges”, invites you to the “First CEI Conference for building regional network of organizations for Rare Diseases”, on 23rd – 24th of March, 2014 in Skopje, R. Macedonia.
First CEI Conference for building regional network of organizations for Rare Diseases is a project that will contribute to strengthening of the capacities of the organizations and to increasing networking and communication between the organizations from the CEI region that work in the field of rare diseases. With this meeting we will contribute towards raising awareness (general public, government institutions, and medical professionals) about rare diseases in Macedonia and the CEI Region.
The focus of the project First CEI Conference for building regional network of organizations for Rare Diseases is on strengthening leadership in advocacy and lobbying for patients’ rights. The conference meeting is for sharing best practices in advocating for patients’ rights and sharing information on implementation of National Plans/Strategies on rare diseases in different countries.
“First CEI Conference for building regional network of organizations for Rare Diseases”, on 23rd – 24th of March, 2014 in Skopje, R. Macedonia.
Draft Agenda
23rd of March, 2014, Hotel Porta, Skopje, R. Macedonia
10:00 – 10:30 h.
Opening of the conference
Vesna Aleksovska, President of the Association of citizens for rare diseases Life With Challenges – Bitola
Drancho Apostolovski, National Coordinator for Macedonia of the Central European Initiative (CEI): Presentation on CEI
10:30 – 10:45 h.
Coffee Break
10:45 – 13:30 h.
Rare Diseases in the Region
Anja Kladar, Vice-president of the Croatian Alliance for Rare Diseases: Presentation on Orphanet Croatia
Nikolina Covic, Social worker at the Croatian Alliance for Rare Diseases: Presentation on support and social rehabilitation for patients with rare diseases, Croatia
Todor Mangarov, President of the Association for Pulmonary Hypertension, Bulgaria: Presentation on the situation of patients with PH in Bulgaria
Marija Joldic, President of the Executive Board of the National Organization for Rare Diseases – Serbia: Presentation on the situation of patients with rare diseases in Serbia
Jasminka Jezdimirovic, President of Association for Rare diseases and disability in Serbia: Presentation on situation of PKU patients in Serbia
Borislav Djuric, President of the organization for rare diseases in Bosnia and Herzegovina: Presentation on situation of patients with rare diseases in Bosnia and Herzegovina
Viktorija Penova, Patient with FOP: Presentation on Life with FOP disease, R. Macedonia
Statements from patients from Kosovo and Albania
13:30 – 14:30 h.
Lunch Break
14:30 – 16:30 h.
Advocacy for patients rights – sharing experience
Vlasta Zmazek, Member of the Board of Directors of European Organization for Rare Diseases (EURORDIS): Presentation on EURORDIS
Irena Znidar, Member of the Board of Directors of European Gaucher Alliance (EGA): Presentation on EGA
Fernanda Torquati, President of the Italian Gaucher Association: Presentation on strengthening patients
Nina Racila, President of the Gaucher Association in Moldova: Presentation on the situation of patients with Gaucher disease in Moldova
Sandra Pavlovic, President of DEBRA, Serbia: Presentation on DEBRA
Polona Zakoshek, President of DEBRA, Slovenia: Presentation on DEBRA
Discussion
19:00 – 22.00 h.
Sightseeing tour and dinner in Skopje / Old Bazaar: Meeting place – at the hotel lobby
Agenda
24th of March, 2014, Hotel Porta, Skopje, R. Macedonia
10:00 – 10:45h.
Press conference – media statements
Vesna Aleksovska, President of the Association of citizens for rare diseases Life With Challenges – Bitola
Ms. Maja Parnardzieva Zmejkova, Director of the Health Insurance Fund Macedonia
Prof. D-r Aspazija Sofijanova, Director of the University Children Clinic – Skopje, President of the Commission for Rare Diseases
Prof. Dijana Plaseska Karanfilska, Macedonian Academy for Science and Art
Katerina Aleksoska, Director of the Bureau of Drugs, R. Macedonnia
Statements from representatives from participating countries
10:45 – 11:00 h.
Coffee Break
11:00 – 13:30 h.
Treatment and care of patients with rare diseases
D-r Vukashin Andric (D-r Vulnet Ferati), Genzyme, Sanofi Aventis: Presentation on the Humanitarian Aid Program and Innovation in treatment for rare diseases
Gordana Lenarcic,mag. farm., Medical Affairs Manager, Celgene International: Presentation on innovation in treatment for rare diseases
D-r Vujkovac Bojan: Presentation on Fabry Centar, Slovenia
Ass. D-r Biljana Coneska Jovanova, University Children Clinic – Skopje, Department for Hematology and Oncology: Presentation on Enzyme Replacement Therapy in Patients with Gaucher Type 1
Prof. Dijana Plaseska Karanfilska, Macedonian Academy for Science and Art:Presentation on Rare Diseases genetics in the era of next generation sequencing
Prof. D-r Zoran Gucev, University Children Clinic – Skopje, Endocrinology Department: Presentation on MPS (Hunter) patients treatment in Macedonia
Prof. D-r Velibor Tasik, University Children Clinic – Skopje, Nephrology Department: Presentation on Rare Diseases in Nephrology
Ass. D-r Ivan Milev, Special Hospital for Chirurgical Diseases, Filip II, Skopje: Presentation on treatment and situation of patients with Pulmonary Hypertension in R. Macedonia
Enrico Blumer: Presentation of a special project: Accessibility for people with disability in R. Macedonia
13:30 – 14:00 h.
Conclusions and evaluation of the conference
14:00 – 15:30 h.
Lunch and departure of participants
Sincerely,
Vesna Aleksovska,
President of “Life With Challenges”