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Conference - European Joint Programme on Rare Diseases (EJP RD)

One-day conference “Rare disease perspectives in Central – Eastern Europe” organized by the Centre for Rare Diseases at MUG and EJP RD. It precedes the 3-day meeting of the General Assembly EJP RD (European Joint Program for Rare Diseases) hosted by the Medical University of Gdańsk.

The aim of the meeting is to bring together people from Central and Eastern Europe countries who are involved in the issue of rare diseases, and introduce them to the opportunities and calls arising from the recently commenced five-year EJP RD programme

Foreign lecturers, people who play key roles in EJP RD will present the health policy directions of rare diseases programmes, research and innovation, currently developed ecosystem for data collection , current plans for Registers, proposed ORPHA coding system, biobanks, education in conducting rare diseases research, role and the capabilities of European Reference Centers and patient organizations. The presentations will be supplemented with short speeches on the current state of these issues in Poland. The meeting will be conducted in English.

The conference will pose a unique opportunity to gain knowledge about further possibilities of implementing the EJP RD programme and development directions for rare diseases reasearch in Europe.

Registration required: “, open until September 1st, 2019”: https: / / open until September 1, 2019.

Meeting programme:

10:00-10:30 Registration, welcome coffee
10:30-10:45 Welcome words: Minister of Health of the Republic of Poland, Dean Medical University Gdansk, EJP RD Coordinator
10:45-11:05 .
11:05-11:45 European Joint Programme on Rare Diseases: What it is and for whom it is? Training, educational and grant opportunities of EJP RD
11:45-12:20 Rare disease research policies in Europe: National RD plans, EJP RD National mirror groups and beyond Polish National Plan for Rare Diseases,
12:20-12:50 European Reference Networks ERN in Poland
12:50-13:25 Rare disease clinical research and innovation
13:30-14:30 Lunch time
14:30-14:55 Rare disease data ecosystem in EJP RD
14:55-15:10 Orpha coding
15:10-15:45 Registries
15:45-16:10 Biobanks
16:10-16:35 Education needs in RD research
16:40-16:45 RD Patient organizations in EJP RD. Patient organisations in a CEE country
16:45-17.00 Closing remarks

Time and place: