KICK OFF MEETING

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EUROGENEThe First Pan-European Learning Service
in the Field of GeneticsProject
ECP-2006-EDU-410018
co-funded by the Community programme eContentplus

• KICK OFF MEETING
• 30 - 31 October 2007
• Ronzano (BO) - Italy

eContentplus 2006
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EUROGENE Project data
EUROGENE Full title The First Pan-European
Learning Service in the Field of Genetics EC
Program eContentplus (2006) Call Call for
proposals for indirect actions under the
multiannual Community Programme to make digital
content in Europe more accessible, usable and
exploitable (Official Journal 2006 C
172/24) Action Educational content 4.1
Targeted Projects for educational
content Contract n. ECP-2006-EDU-410018 Start
date 1 October 2007 Duration 3
years Budget Eur 3.599.994 co-funded at 50 by
the EC
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EUROGENE General Objective
The EUROGENE objective is to migrate towards
more efficient development of higher quality
(multimedia) didactic material on genetics
through the guided editing and assembly of
educational packages based on the consortium
proprietary learning design metadata framework
and the sharing of different types of learning
objects between content owners, in 9 languages.
  The project proposes to do so by establishing
the EUROGENE web portal as a reference point for
the sharing of a critical mass of educational
content items and packages, offering an
integrated toolset and service for content
authors.
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EUROGENE Partners List

1 Month number the participant exits the
project

1 Month number the participant exits the
project
The EUROGENE Consortium is composed by 16
Content Providers providing a first content base
of 50.000 content items. 5 Technological
Partners who will provide the tools for content
enrichment, the necessary multilingual
translation and the integration of tools in the
Portal.
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EUROGENE Partners List

1 Month number the participant exits the
project

1 Month number the participant exits the
project
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Partners Presentation
PARTNERS PRESENTATION
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P01 EGF European Genetics FoundationITA

• Contact persons
• Michele Bianco Managing Director
  michele.bianco_at_eurogene.org
• Andrea Zanolla Project Manager
  andrea.zanolla_at_eurogene.org

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Partner 01 EGF (Coordinator)

• EGF - Presentation
• The European Genetics Foundation EGF is the
  is the leading partner (Coordinator) of the
  EUROGENE Project. EGF has coordinated more then
  10 EU funded projects and has gained a proved
  experience in management and coordination.
• EGF was founded in 1996 by a group of researchers
  who were already involved in the activity of the
  European School of Genetic Medicine, set up in
  Sestri Levante (Genova, Italy) in 1988 by
  Professor Victor A. McKusick (Baltimore, USA) and
  Professor Giovanni Romeo.
•  
• EGF Activities range from the organisation of
  high level scientific training (the Nobel Prize
  Mario Capecchi is the director of the ESGM Cancer
  Genetics course) to the development of distance
  learning tools using the latest web technologies
  available. To enhance the availability, the share
  and the quality assessment of digital educational
  contents is an integrating part of EGF efforts to
  improve the competitiveness of training and
  research in Europe in the field of Genetics.

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Partner 01 EGF

• EGF Key Staff
• Prof Giovanni Romeo President
• Michele Bianco Managing director and Project
  Coordinator
• Andrea Zanolla Project Manager
• Giuseppe Curcio EGF digital contents manager
• Alberto Goldoni ICT staff
• Matteo Barsotti ICT staff
• Margherita Beltrame, Serena Paterlini
  coordination activities and consortium management
  and enhancement

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P02 SeGeSta Technology Training ITA

• Contact persons
• Enrico Ardizzoni Administrator
  enrico.ardizzoni_at_eurogene.org
• Matteo Barsotti IT Developer
• Luigi Marras - IT Developer

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Who is SEGESTA

• Current activities
• Residential training management 7 years
  collaboration with EGF (more than 50 ESGM
  courses)
• Web Casting and on-Demand platform (16 Hybrid
  Courses, mediateca for platform exploitation, see
  website)
• Project Management (involved in 4 adv.training
  and cooperation projects)

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EUROGENE ProjectActivity
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P03 The Open UniversityKnowledge Media
InstituteUK

• Zdenek Zdrahal
• Trevor Collins

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The Open University

• 160,000 undergraduate students
• 25,000 postgraduate students worldwide
• More than 2,000,000 students since 1971
• 170,000 students on-line, 280 courses use
  e-learning
• 100 acre Milton Keynes campus, 13 regional
  centres
• 7,700 Associated Lectures support students
• 80 students employed when they commence their
  studies

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Knowledge Media Institute

• Founded in 1995
• New technologies for Distance Learning
• E-learning, knowledge technologies, semantic web,
  multimedia, telepresence and social software
• In 1995, staff of about 25 people, in 2007about
  70 people.

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P04 Telelingua International BE

• Luc Van Haute

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Partner 04 TELELINGUA

• Company Presentation
• 20 years active in Translation Services
• Strong technical background in tools development
• Follow the evolution of the combination of Human
  Translation with Machine Translation
• Experience in EC projects
• Project Management by Luc Van Haute ( 20 years
  expertise 3 EC projects via PNO Consultants)

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Partner 04 TELELINGUA

• Scope of work
• Provide building and translation of Genetic
  specific terminology in multiple languages
  supported by SYSTRAN MT engine
• Systran will import this glossary on Machine
  translation engine for better search results
• Very close collaboration with SYSTRAN is needed
• Number of entries depending on availability of
  existing material and SYSTRAN medical dictionary,
  as well as budget allocation.

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P05 ERASMUS Medical Centre NL

• Cornelia Van Duijn

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P06 University of PLYMOUTH UK

• Heather Skirton

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P07 University of SHEFFIELD UK

• Chris Cannings

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Partner 07 Sheffield
Academic Unit of Mathematical Modelling and
Genetic Epidemiology School of Medicine and
Biomedical Science University of
Sheffield Professor Chris Cannings Dr Dawn
Teare Dr Kevin Walters
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Partner 07 - Sheffield
MSc Genetic Epidemiology/ Statistical
Genetics Genetics Dr Angie Cox, Dr Martin
Nicklin Epidemiology Professor Mike
Campbell/Teare/Walters Statistics Walters Program
ming Cannings Population genetics Cannings Linka
ge analysis Professor DT Bishop/ Dr Jenny
Barrett, Dr Deborah Thompson Association
analysis Dr Mark Iles/Bishop/ Barrett Segregation
analysis Teare
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P08 University of PARIS SudFR

• Françoise Clerget

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Partner 08 Paris-Sud

• Title Paris-Sud University
• The Paris-Sud University has a complete array of
  competences, ranging from the purest of exact
  sciences to medicine. Medical training 3000
  students and 270 teachers.
• It devotes more than half of its budget to
  research, and has 127 internationally renowned
  laboratories, in particular the UMR 535.
• The UMR 535 is an INSERM unit (25 members)
  devoted to population genetics and genetic
  epidemiology and headed by Françoise
  Clerget-Darpoux

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Partner 08 Paris-Sud

• Title Teaching of statistical genetics
• In France, the only teaching of statistical
  genetics (covering population genetics and
  genetic epidemiology) is an option of a public
  health Master in Paris-South under the
  responsibility of FCD.
• FCD
• External examiner for the Sheffield Master of
  Genetic Epidemiology
• President of the International Society of Genetic
  Epidemiology.
• Scientific Committee of the European Society of
  Human Genetics
• Associate Editor for the section of Statistical
  Genetics of the EJHG.
• All 12 teachers have an expertise recognized at
  the international level. Many of them (7) are
  researchers at the UMR 535.

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Partner 08 Paris-Sud

• Title educational content
• Genetic epidemiology (18 Lectures- 820 slides)
  Basic level
• Statistical Genetics (50 lessons, 1750 slides)
  Master level
• Population genetics (10 lectures- 400 slides)
  Master level
• Seminar and workshops (1200 slides) for PhD and
  Post Doctoral level
• Courses available both in French and English.

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EUROGENE The First Pan-European Learning
Service in the Field of Genetics
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P09 University of PARIS 5FR

• Stanislas Lyonnet

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Partner 09 Paris 5 (AP)

• Title Paris Descartes University (Paris 5)
• Medical School
• Chemistry School
• Dentistry School
• Human and Social Sciences
• Psychology
• Law School
• Mathemathics-BioInformatics
• Administration Board
• Scientific Council
• Board of Studies and University Life (CEVU)
• Documentation

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Partner 09 Paris 5 (AP)

• Paris Descartes University (Paris 5)
• Particular Scopes
• Genetics
• Rare Diseases
• Biotherapies
• Bioinformatics
• Provider
• Teaching material (medical studies)
• Slide collections (medical studies European
  Master Genetics)
• DataBase access
• Genatlas http//www.dsi.univ-paris5.fr/genatlas/
  

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EUROGENE The First Pan-European Learning
Service in the Field of Genetics
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Partner 09 Paris 5 (AP)

• Paris Descartes University (Paris 5)
• Pr Stanislas Lyonnet (lyonnet_at_necker.fr)
• Dr Jeanne Amiel (amiel_at_necker.fr)
• Mrs Gwenaelle Staub (gwenaelle.staub_at_nck.aphp.fr)
• Dr Martine LeMerrer (Genatlas)
• http//www.parisdescartes.fr/

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EUROGENE The First Pan-European Learning
Service in the Field of Genetics
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P10 Medical School of the University of Göttingen
GER

• Heike Bickeboller

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Partner 10 Gottingen - UMG

• Institution
• University Medicine Göttingen (UMG)
• Center of Informatics, Statistics and
  Epidemiology
• Department of Genetic Epidemiology
• Founded in 2001
• Chair Prof. Dr. Heike Bickeböller
• This Department is a Center of Excellence in
  Genetic Epidemiological Methods of the German
  National Genome Research Network

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Partner 10 Göttingen - UMG

• Staff and Contacts
• Prof. Dr. Heike Bickeböller
• Working in Statistical Genetics and Genetic
  Epidemiology since about 1990
• Ex-Post-Doc of Francoise Clerget-Darpoux who is
  present at the kick-off meeting
• Textbook author of Springer Einführung in die
  Genetische Epidemiologie
• Currently 1 scientist, 3 doctoral students in
  statistics, 1 doctoral student in medicine, 1
  technical worker in the group
• of these 2 German, 2 EU, 1 non-EU
• Staff for EUROGENE needs to be recruited

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EUROGENE The First Pan-European Learning
Service in the Field of Genetics
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Partner 10 Göttingen - UMG

• Teaching materials
• Full semester course in Genetic Epidemiology
• Full semester course Issues in study conduct for
  medical research
• Full semester course Biostatistics (aimed at
  an audience such as geneticists or molecular
  medicine students)

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P11 University of NewcastleUK

• John BurnAnne-Marie Gerdes

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EUROGENE Newcastle University

• Institute of Human Genetics
• 5 research centre with 27 principal
  investigators
• 12 Professors and 80 postgraduate students
• Centre for Life
• Commercial Bioscience centre
• Public visitor centre (1 mio visitors over 6
  years)
• LifeLab (20,000 school children last year)
• Policy Ethics and Life Sciences Institute
• Life Knowledge Park - one of 6 in UK
• Promote the incorporation of genetic knowledge
  into health care

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EUROGENE Newcastle University
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EUROGENE Anne-Marie Gerdes

• MD, PhD and Professor in clinical genetics,
• Odense University Hospital, Denmark.
• Since 1989 teaching and examination in
  pregraduate courses in medical genetics.
• Coordinator of pregraduate courses in medical
  genetics 1994-1996 and 2007.
• Diploma in university pedagogical education and
  teaching.

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P14 CINGCY

• Marina Kleanthous

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Partner 14 CING

• Title CING Molecular Genetics Thalassaemia
  Department
• The CING is specializes in neurology, molecular
  biology and other aspects of human genetics. - 9
  Departments and 4 Clinics
• Prenatal Diagnosis for thalassaemia
• Molecular diagnosis for thalassaemia
• Pre-implantation Genetic Diagnosis for
  thalassaemia
• Non Invasive Prenatal Diagnosis for Thalassaemia
• Development of diagnostic chip - Thalassochip
• Drug Therapy for Thalassaemia
• Coordination of the Ithanet project

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Partner 14 CING

• Title Staff
• Marina Kleanthous Team Leader
• Marios Phylactides Scientific Staff
• Marios Flouros Authorised to the contract
• Elena Ioannidou Contact person for administrative
  issues
• Elena Kyriacou Administrative staff
• Andreas Mildiadous IT personnel

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P 15 PRAGUE Institute of Biology and Medical
Genetics2nd School of Medicine, Charles
University University Hospital Motol

• Milan Macek
• Sarka Vejvalkova sarka.vejvalkova_at_lfmotol.cuni.cz

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Partner 15 Prague Institute of Biology and
Medical Genetics, 2nd School of Medicine, Charles
University University Hospital MotolChair
Prof. Milan Macek, Jr., MD, DSc.

• Main activities
• superspecialized consulting in medical genetics
  (part of the largest paediatric centre in CE
  Europe)
• pre- and postgraduate teaching (preclinical
  biology in 2nd year, clinical genetics in 5th
  year, postgraduate courses)
• research
• inborn and inherited glomerulal disorders,
  reproductive genetics, spinocerebellar ataxias
  and neurodegenerative disorders, neuromuscular
  diseases, thrombembolic conditions, CFTR gene
  mutations, familiar nephropathies, microdeletion
  syndromes, cell signaling in oncogenesis, autism
  etc.

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EUROGENE The First Pan-European Learning
Service in the Field of Genetics
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Partner 15 Prague Institute of Biology and
Medical Genetics, 2nd School of Medicine, Charles
University University Hospital MotolChair
Prof. Milan Macek, Jr., MD, DSc.

• Biology Unit (2 PhDs 2 technicians)
• oncogenetics (p53, oncogene rearrangements,
  expression, microsatellite instability,
• methylation), molecular cytogenetics of
  microdeletion syndromes, syndromology and
  molecular genetics of neurological disorders
• Clinical Genetics Unit (5 MDs, 2 nurses)
• pre- and postnatal genetic diagnosis and
  counseling, pre- and postgraduate eduacation
  (cancer families, neurogenetics - muscle
  diseases, ataxias, mental retardation and autism,
  chromosomal instabilities, microdeletion sy. in
  neurology and cardiology, sy. with growth
  retardation, sensory disorders and
  genodermatoses)
• Cytogenetics Unit (1 PhD., 1 MD, 8 technicians)
  
• cultivation and cytogenetic examination (pre
  and postnatal) of human cells, FISH examinations
  - interphase/metaphase (Di George(22q11.2),
  Prader-Willi (15q12), Angelman (15q12)
  Williams-Beuren (7q11.23) Smith-Magenis (17p11.2)
  Miller-Diecker (17p13.3) p53 (17p13)
  interchromosomal and subtelomeric regions
  determining of markers deletion of region SRY

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EUROGENE The First Pan-European Learning
Service in the Field of Genetics
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Partner 15 Prague Institute of Biology and
Medical Genetics, 2nd School of Medicine, Charles
University University Hospital MotolChair
Prof. Milan Macek, Jr., MD, DSc.
Reproduction Genetics Unit (2 MDs, 3
technicians) genetic counseling in infertile
couple, cytogenetics and molecular genetics in
collaboration with other units, preparation
of gametes, in vitro fertilization of oocytes,
ICSI and cultivation of embryos for transfer
in utero, cryopreservation of embryos and male
gametes, development of preimplantation genetic
diagnostics Molecular Genetics - Cystic
Fibrosis Center (4 MDs, 1 PhD, 2 technicians)
molecular genetic analysis of cystic fibrosis
and other known "CFTRpathies" (certain types of
male infertility, chronic idiopathic
pancreatitis and lung diseases of yet unknown
etiology). Established as National
Reference Laboratory for the molecular genetic
analysis of these disorders - Neurogenetic
Center (2 MDs, 3 PhDs., 3 technicians)
molecular genetic analysis of neurogenetic
disorders with special focus on inherited forms
of neuro- muscular degenerations (DMD/BMD),
Myotonic dystrophy, Spinobulbar muscular atrophy,
Spinal muscular atrophy, Spinocerebellar
atrophy (SCA 1,2,3) Friedreich ataxia, Angelman/
Prader-Willi syndrome, Fra X.
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EUROGENE The First Pan-European Learning
Service in the Field of Genetics
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P 16 ESHGEuropean Society of Human Genetics

• Domenico Coviello

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Partner 16 ESHG (European Society of Human
Genetics)
European Society of Human Genetics (ESHG) The
European Society of Human Genetics (ESHG) is an
international professional society founded in
1967 which promotes research in basic and applied
human and medical genetics, to ensure high
standards in clinical practice and to facilitate
contacts between all persons who share these
aims, particularly those working in Europe.
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EUROGENE The First Pan-European Learning
Service in the Field of Genetics
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Partner 16 ESHG (European Society of Human
Genetics)

• The Society encourages and seeks to
• integrate research and its translation into
  clinical benefits
• improve professional and public education in all
  areas of human genetics.
• It has its financial base in Leuven, Belgium and
  acts under Belgian law. Committees take an active
  role in performing and coordinate activities.

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EUROGENE The First Pan-European Learning
Service in the Field of Genetics
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Partner 16 ESHG - Staff

• The Education Committee is active in harmonizing
  education in Europe and in liaison with other
  international human genetic societies of other
  institutions that provide genetic education
• ASHG (Celia De Lozier)
• ISONG, International Society of Nurses in
  Genetics (Heather Skirton),
• International Bioethics Committee (UNESCO)
  (George Kosztolanyi),
• GIG, Genetic Interest Group and Genetic Alliance
  (Patient organizations) (Alastair Kent),
• NCHPEG, National Coalition of Health Professional
  Education in Genetics and Education Committee of
  Human Genetic Society of Australasia (HGSA)
  (Domenico Coviello),
• NHS- National Genetics Education and Development
  Centre in UK (Peter Farndon).
• Moreover the Education Committee is working in
  close collaboration with the NoE EUROGENTEST
  (www.eurogentest.org) (J.J. Cassiman).

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EUROGENE The First Pan-European Learning
Service in the Field of Genetics
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P 17 ALINARI

• Andrea de Polo
• Sam Minelli

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Partner 17 - Alinari

• Partner profile
• Alinari is the oldest photographic archive (over
  4.5M images)
• Contribution with 5000 images and related text
• WP3 Sustainability model
• WP9 Assembly and enrichment of edu content
• WP10 Platform test
• WP11 Roll-out
• WP13 (Leader) Dissemination
• Experience on EC projects since 1995 as
  coordinator/partner
• Long time activity as project promoter, including
  testing, validation and dissemination locally and
  abroad

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Partner 17 - Alinari

• Main personnel
• Andrea de Polo since 1995 involved on EC
  projects! Main role as project supervisor in the
  company, speaker, activity including testing,
  validation and dissemination.
• Sam Minelli IT technical manager. Strong
  experience on deliverables, technical matters
  including metadata, data mapping, multi lingual
  databases, ontology and semantic.
• Francesca Tavanti skilled on legal and financial
  accounting tracking and reporting information.
  Good experience on editing complex project
  deliverables.
• Ilaria Del Secco Main scientific and
  iconographic expert. Director Alinari Picture
  Archive.

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P 18 MALTA

• Alex Felice
• Stephanie Bezzina Wettinger

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Partner 18 MALTA

• Title Laboratory of Molecular Genetics
• Research on thalassaemia and regulation of gene
  expression and inflammation underlying common
  diseases including myocardial infarction,
  diabetes, recurrent miscarriages, as well as on
  other diseases
• Conducts newborn testing and provides molecular
  genetic diagnostic services for St Lukes
  Hospital
• Undergraduate and Graduate teaching and research
  programmes
• Maintains a DNA bank of Maltese samples from
  random newborn and a from individuals with a
  variety of other genetic diseases. Partners in
  Eurobiobank and BBMRI

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Partner 18 MALTA

• Title Staff
• Alex Felice is a Professor at the University of
  Malta and Program Director of the Laboratory of
  Molecular Genetics and Section of Molecular
  Genetics in St Lukes Hospital/Mater Dei
  Hosptial. Main research interest is in
  Thalassaemia and globin gene control.
• Dr Stephanie Bezzina Wettinger is a Lecturer with
  the Institute of Healthcare responsible for the
  practical skills development of students and
  teaching at undergraduate and graduate level in
  Genetics. Research interests include inflammation
  and myocardial infarction gene-environmental
  interactions in Parkinsons disease.

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Content Base

• Genetics
• Mendelian and Non-Mendelain Inheritance
• Linkage dysequilibrium, recombination and gene
  mapping Family and Association studies
• DNA structure and organisation
• DNA replication
• Mutation and repair Cancer genetics
• Control of gene expression
• Methods of Analysis in genetic research and
  diagnostics

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P 19 VALLADOLID

• Juan Telleria

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P19 - VALLADOLID

• The Faculty of Medicine of the University of
  Valladolid is the oldest Faculty of Medicine in
  Spain (1406) it is located in the city centre,
  part of the University Campus, and by the
  University Clinic Hospital. It also counts on a
  General Library, housing 25.000 volumes and
  reading rooms for 450 students. There is also a
  newspaper and magazine library which subscribes
  to over 200 publications, as well as an automatic
  bibliography search system. In addition the
  linked University Clinic Hospital possesses a
  library with over 800 subscriptions to journals.
  There is also a video and multi-media room
  available for lectures. The faculty of Medicine
  of Valladolid collaborates with the European
  Genetics Foundation organizing hybrid courses in
  the field of the Human and Medical Genetics.

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P 20 VILNIUS

• Vaidutis Kucinskas
• Danguole Steponaviciute

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Partner 20 Vilnius
PRESENTATION OF THE INSTITUTION
Vilnius University
DEPARTMENT OF HUMAN AND MEDICAL GENETICS
(established in 1579)
12 faculties, 8 institutes, 11 study, research
and other centres
(established in 1991)
http//www.geneticahumana.lt/VU/engl/home.htm
RESEARCH UNIT Centre for Research of Human Genome
CLINICAL UNIT Centre for Medical Genetics of
Vilnius University Hospital Santarikiu Klinikos
COURSES
Faculty of Medicine
Acad. hrs
Studies programme
Course
Cycle
(established in 1871)
MedicineOdontology
4856
Basic and human genetics
Integrated studies
11 clinics 3 institutes, 4 departments, 3
university hospitals
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Medicine
Clinical genetics
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Nursing
Biology and genetics
1st cycle (Bachelor)
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Ergotherapy Physical Therapy
Human biology and genetics
Basic genetics
32
Philosophy Psychology
80
Medical Biology
Human biology and genetics
2nd cycle (Master)
80
Medical Biology
Human molecular genetics
80
Medical Biology
Clinical genetics
32
Genetics
Medical genetics
32
Genetics
Human genome analysis
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Partner 20 Vilnius
SCIENTIFIC GROUP
STAFF AND CONTACTS
Address Department of Human and Medical
Genetics,Faculty of Medicine of Vilnius
UniversitySantarikiu street 2, LT-08661,
VilniusLITHUANIA
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P 21 LEUVEN

• Jean Jacques Cassiman
• Sara Berwouts

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Partner 21 Leuven

• Catholic University of Leuven Centre for Human
  Genetics
• 300 people
• Clinical Genetics Section 5 research groups
• Molecular Genetics Section 9 research groups
• Human Mutations and Polymorphisms Section 3
  research groups

www.eurogentest.org
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Partner 21 Leuven

• EuroGentest Network of Excellence (NoE)
  interacting networks

ECA
ORPHANET INDUSTRY CANGENETEST EUROCARE-C
F CAPABILITY PHGEN
RELAGH SAFE NoE
GeneBanC CF
Network
EMQN ERNDIM ESHG
OECD CDC
ACMG WHO EFB
EUROPABIO EDMA
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Partner 21 Leuven

• EuroGentest Network of Excellence (NoE) -
  structure

Steering Committee Coordination JJ Cassiman,
Leuven
Management Team
Advisory Board
Els Dequeker Ros Hastings
Ulf Kristoffersson Helena Kääriäinen Joerg
Schmidtke Jorge Sequeiros
Ségolène Aymé Bruno Dallapiccola
Gert Matthijs Milan Macek Bert Bakker
Herman Nys Kris Dierickx
Alastair Kent Domenico Coviello
Quality Management
Public Health Clinical Genetics
Ethical, Legal Social Issues
Information Databases
Emerging technologies
Education/Information
Unit 1
Unit 4
Unit 5
Unit 6
Unit 3
Unit 2
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EUROGENE The First Pan-European Learning
Service in the Field of Genetics