EXPERT CENTERS FOR RARE DISEASES IN THE HEALTHCARE SYSTEM OF BULGARIA

Overview

<> Date: 4 April 2025 | 09:30 - 15:30 (Eastern European Time – Sofia, Bulgaria)

Topic: EXPERT CENTERS FOR RARE DISEASES IN THE HEALTHCARE SYSTEM OF BULGARIA

I -st National Rare Diseases Expert Centers Symposium

Format: in-person in Sofia (Bulgaria)

Summary: The I -st National Rare Diseases Expert Centers Symposium aims to bring together representatives from expert centers, national healthcare institutions, patient organizations, academic community, industry and European Reference Networks. Our primary objectives are to reinforce the role of expert centers for rare diseases, facilitate the application of ORPHAcodes within health information systems which will enhance data interoperability, support the integration of expert centers into national healthcare frameworks, exchange of best practices and improve coordination both nationally and internationally

Language: The symposium will be held in English.

Access and registration: On site attendance in Sofia (Bulgaria) by personal invitation from the Organizing committee.

Industry representatives: Please, contact the Organizing committee: g.stefanov@raredis.org

Organizer: Institute for Rare Diseases, Bulgaria a leading organization dedicated to supporting expert centers, conducting research, and developing policies to enhance care for patients with rare diseases.

For additional information and questions: eva.popova@raredis.org

Agenda

9.00 – 9.30 Registration & Welcome Coffee
Official Opening and Welcome Address
9:30-9:50	Welcome by Prof. Rumen Stefanov Opening Remarks by Dobromira Kareva (Ministry of Health) Introduction to the Symposium objectives
European Reference Networks – Opportunities at EU and National Level Moderator: Prof. Rumen Stefanov
10:00 – 10:50	Keynote Presentation What to expect from and for the European Reference Networks in the upcoming years? Prof. Birutė Tumienė (ERN Board of Member States)
10:50 – 11:30	Panel Discussion Prof. Birutė Tumienė, Prof. Maria Orbetzova, Prof. Elisaveta Naumova; Prof. Ivelina Yordanova
Orpha Coding Benefits for Healthcare Providers and Centers of Expertise Moderator: Prof. Rumen Stefanov
11:30 – 11:40	Keynote Presentation Orphanet and Orpha Coding Caterina Lucano, Ridhi Jani (Orphanet, INSERM, France)
11:40 – 12:40	Panel Discussion Prof. Krasimira Dikova (National Center for Public Health and Analyses); Mr. Deyan Prokopov (Gamma Consult), Mr. Ivailo Stoichev (National Health Information System)
12.40 – 14.00 LUNCH BREAK
Measures and Policies to Support the Centres of Expertise Moderator: Prof. Rumen Stefanov
14:00 – 15:00	Panel Discussion Katya Slavcheva (Ministry of Health); Dr. Galya Yordanova (National Health Insurance Fund); Prof. Shima Mehrabian-Spasova (Rare Disease Expert Center); Assist. Prof. Adv. Maria Hristozova (Medical University of Plovdiv); Mr. Valdimir Tomov (National Alliance of People with Rare Diseases)
15.00 – 15.30 Award of Certificates & Closure
Information & registration: Mrs. Evelina Razheva e-mail: eva.popova@raredis.org ; tel.: 0896816662 Organized by: Institute for Rare Diseases – Bulgaria \| www.raredis.org