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November 2016
EMC only

Biannual meeting of the Executive Management Committee

9 November 2016
Leiden University Medical Center, Leiden, Netherlands + Google Map

The Executive Management Committee (EMC) consists of work package leaders and is responsible for the day-to-day operational management of the project alongside the coordination team.

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February 2017

The 3rd IRDiRD conference in Paris

February 8 - February 9
Université Pierre et Marie Curie (UPMC) Jussieu, 4 Place Jussieu
Paris, 75005 France
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The third conference of the International Rare Diseases Research Consortium (IRDiRC) will take place February 8-9, 2017 in Paris, France at the conference center of Université Pierre et Marie Curie (UPMC) Jussieu.

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March 2017

3rd conference on European Reference Networks

March 9 @ 09:00 - March 10 @ 18:00
Lithuanian Exhibition and Congress Centre LITEXPO, Laisvės pr. 5
Vilnius, 04215 Lithuania
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The Conference will focus on the presentation of the newly approved European Reference Networks.

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Rare Diseases Registries Workshop in Madrid

March 21 @ 12:30 - March 22 @ 14:00
Hospital Universitario La Paz, Paseo de la Castellana, 261
Madrid, 28046 Spain
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The workshop will bring together all the key stakeholders in the development of rare disease registries and will include issues, such as Health Policies on Rare Diseases, rare disease-related European initiatives, interoperability, best practices, challenges and examples of European rare disease registries.

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April 2017

Bioethics symposium in Vienna

April 5
Institute of Molecular Biotechnology, Dr. Bohr-Gasse 3
Vienna, 1030 Austria
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The symposium will discuss the main challenges arising from recent advancements in life sciences. New technologies like stem cell research, organoids and genome editing have raised enormous expectations within the biomedical research community, patients and the general public. At the same time many ethical questions have emerged and need to be discussed in an open dialogue.

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World Orphan Drug Congress USA

April 19 - April 21
Washington Marriott, Wardman Park
Washington DC, DC United States
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The World Orphan Drug Congress USA is a place where innovation and expertise is showcased, solutions are found and learning is done. In 2017 we're looking to the future...What, for instance, happens when a global orphan drug biopharma goes into Korea, India and Brazil – places where generics is king? Or how commercially acceptable is an even-higher priced, potentially one-time treatment gene therapy? Is the regulatory and reimbursement pathway more or less the same as other orphan drugs?

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Course of the Italian Undiagosed Patients Association

April 27
CISEF-Gaslini, Via Romana della Castagna 11A
Genova, 16148 Italy
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The purpose of the course is to have an overview of existing activities at the international level (USA, Germany, UK, Sweden) and present the Genoa's clinical center, unique in Italy.

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May 2017

RD-Connect, NeurOmics & EURenOmics joint Annual Meeting

May 1 - May 5
H2 Hotel Berlin-Alexanderplatz, Karl-Liebknecht-Str. 32
Berlin, 10178 Germany
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The RD-Connect annual meeting will be held back-to-back with the joint NeurOmics and EURenOmics final meetings. On Wednesday 3rd of May, the three projects will host a joint Outreach Day that will bring together patients, policy makers, researchers and pharma companies.

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E-Rare Workshop on data sharing and harmonization

May 3 @ 18:00 - May 4 @ 17:00
Ramada Berlin Alexanderplatz, Karl Liebknecht Strasse 32
Berlin, 10178 Germany
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The workshop aims at improving the process of data sharing and harmonization as well as to allow open discussion on further needs. Top specialists in the field will present not only the latest update on the state-of-the-art but also available tools, including hands-on practical session.

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Inserm Workshop 246 – phase I in Bordeaux

May 15 @ 15:30 - May 17 @ 14:00

The workshop will focus on the methodological issues of management and reuse of health data and provide insights and tools regarding open data, FAIR data management, data discovery and reuse, and confidentiality and security.

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