“First CEI Conference for building regional network of organizations for Rare Diseases”

“First CEI Conference for building regional network of organizations for Rare Diseases”

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”

 

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