VASCern The European Network on Rare Multisystemic Vascular Diseases MEMBERS GOVERNANCE STRUCTURE WORKING GROUPS September 2016 1 VASCern HCP Member Applicants Full list available on the Directory of HCP Members 31 Healthcare Providers

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  1. VASCern The European Network on Rare Multisystemic Vascular Diseases MEMBERS GOVERNANCE STRUCTURE WORKING GROUPS September 2016 1

  2. VASCern HCP Member Applicants Full list available on the Directory of HCP Members 31 Healthcare Providers … … from 11 European Union Member States (Belgium, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Netherlands, United Kingdom, Sweden) applied for ERN Membership 2

  3. VASCern NETWORK ASSEMBLY COORDINATOR Governance larger HCP teams & Patient Rotative coordination : election among Members every 3 years representatives + VASCern Project team Once a year at Board meeting BOARD ADVISORY BOARD Stategic Decision-making Consultation and Evaluation, Feedback external evaluation HCPs & Patient Representatives Scientific Societies & expert OTHER ERNs Once a year or related to needs Representatives REPRESENTATIVES Feedback (as necessary) Feedback to Feedback to the Board & Council the Board & Council COUNCIL Operational Decision-making 5 RARE DISEASES 5 TRANSVERSAL WG Chairs WORKING GROUPS (RDWG) Co-chairs (substitutes) WORKING GROUPS Every 4 months or related to needs 1 Chair 1 Chair 1 or 2 Chairs / co-chairs PATIENT-WG 1 or 2 Chairs / co-chair s 1 Co-chair 1 Co-chair Monthly conference call Monthly conference call Rotative coordination : election among 1 Chair Rotative coordination : election among Members every 3 years Members every 3 years 5 Co-chairs ( 1/ RDWG) Once a month or related to needs Once a month or related to needs Rotative coordination : election 3 among Members every 3 years Once a month or related to needs

  4. VASCern 5 RARE DISEASES WORKING GROUPS HERITABLE Structure THORACIC (RDWG) AORTIC DISEASES HTAD-WG 1 Chair MEDIUM SIZED 1 Co-chair ARTERIES HEREDITARY MSA-WG HAEMORRHAGIC TELANGIECTASIA 1 Chair HHT-WG 1 Co-chair PATIENT-WG 1 Chair 1 Chair 1 Co-chair 5 Co-chairs PEDIATRIC & VASCULAR PRIMARY ANOMALIES LYMPHEDEMA VASCA-WG PPL-WG 5 TRANSVERSAL 1 Chair 1 Chair WORKING GROUPS 1 Co-chair 1 Co-chair Patient Training & Communication eHealth Ethics Registry Education 1 Chair 1 Chair 1 Chair 1 Chair 1 Co-chair 1 Chair 4 1 Co-chair 1 Co-chair 1 Co-chair 1 Co-chair

  5. PATIENT-WG Members HHT MSA Riet ALAVERDY, De Hart&Vaatgroep Juergen GRUNERT, Vorsitzender, Luisa BOTELLA, Asociación HHT España, EPAG Deutsche Ehlers-Danlos-Initiative e.V., Patient-WG Caz COXALL, HHT UK EPAG & Co-chair (tbc) Claudia CROCIONE, HHT Europe, Co-chair Romeo PENZO, AISED, Ehlers-Danlos Paolo FEDERICI, Associazione Fondazione Italiana HHT 'Onilde Carini', EPAG & Patient- PPL WG Chair Representative names tbc Anne GOUSTILLE, AMRO, France Christina GRABOWSKI, Morbus Osler, VASCA Germany, EPAG Petra BORGARDS and Elisabeth Diana LAWSON & Matthew FLETCHER, HUHN, GERVAS, Germany Telangiectasia Self Help Group, UK Anne-Marie MONAMI, VASCAPA Rafaella RESTAINO, Fondazione HTAD Alessandra Bisceglia W ALE Onlus, Valentina FAVALLI, MAGICA ONLUS, Italy, Co- Italy, EPAG chair Caroline VAN DEN BOSCH & Maria Maria Carla FAVINI, JPETER Marfan, Italy JONGMA, HEVAS, NT, Co-chair Patrice TOUBOULIE, MARFANS, France, EPAG Ange VAN DER VELDEN, LGD Alliance Nederland, LGD Alliance Europe 5

  6. Hereditary Haemorrhagic Telegiectasia HHT-WG Rare Diseases HHT - Hereditary Haemorrhagic Telangiectasia 8 HCP Members DE, Essen, GEISTHOFF Urban Centers cooperating DK, Odense, KJELDSEN Anette (ongoing development) HHT-WG FR, Lyon, DUPUIS-GIROD Sophie, Co- SP, BOTELLA Luisa chair IT, Crema, BUSCARINI Elisabetta, Deputy Co-chair IT, CROCIONE Claudia, Patient rep IT, Pavia, PAGELLA Fabio IT, Bari, SABBA Carlo NT, Utrecht, MAGER Hans-Jurgen UK, London, SHOVLIN Claire, Chair 6

  7. Heritable Thoracic Aortic Diseases HTAD-WG Rare Diseases Marfan Syndrome type 1 and 2, Loeys Dietz Syndromes 1-6, Aneurysm Osteoarthitis Syndrome, Arterial tortuosity syndrome, Multisystemic Smooth Muscle Cell Dysplasia syndrome, Familial thoracic Aortic Aneurysms Dissections (FTAA(D)) with mutations in FBN1, TGFB2, TGFB3, SMAD2, SMAD3, TGFBR1, TGFBR2, ACTA2, MYH11, MYLK, PRKG1, FOXE3, MAT2A, MFAP5, Familial Aortic Aneurysms Dissections (FAAD), familial forms of bicuspid aortic valve with aortopathy, FBLN4 related cutis laxa, filaminopathies 13 HCP BE, Ghent, DE BACKER Julie, Chair Centers cooperating Members BE, Antwerpen, LOEYS Bart (ongoing development) DE, Hamburg, DEBUS Sebastian NT, Groningen, DULFERE, Eelco HTAD-WG FR, Paris, JONDEAU Guillaume, Co-chair SP, Barcelona, EVANGELISTA HU, Budapest, SZABOLCS Zoltan Arturo IT, Pavia, ARBUSTINI Eloisa NT, Leiden, HILHORST Yvonne IT, FAVALLI Valentina, Patient rep RO, Bucharest, JURCUT Ruxandra IT, Firenze, PEPE Guglielmina IT, Milan, PINI Alessandro NT, Amsterdam, GROENINK Maarten NT, Radboudumc, Marlies KEMPERS NT, Rotterdam, Ingrid VAN DER LAAR SW, Stockholm, BJORCK Erik UK, London, ROBERT Leema 7

  8. Medium Sized Arteries MSA-WG Rare Diseases Vascular Ehlers Danlos Syndrome To be expanded to: Takayasu disease, Thromboarteritiis obliterans (also called Buerger arteritis), arterial fibromuscular dysplasia 6 HCP BE, Ghent, DE BACKER Julie Centers cooperating Members BE, Antwerpen, LOEYS Bart (ongoing development) FR, Paris, JEUNEMAITRE Xavier, Co- BE, Brussels, PERSU Alexandre MSA-WG chair IT, Pavia, ARBUSTINI Eloisa IT, Milan, PINI Alessandro UK, London, ROBERT Leema, Chair 8

  9. Pediatric and Primary Lymphedema PPL-WG Rare Diseases Lymphedema; Congenital Lymphedema: Milroy syndrome; Late onset lymphedema: Meige syndrome, Lymphedema distichiasis syndrome, Emberger syndrome; Lymphedema with systemic involvement: Hennekam syndrome, PIEZO1 related lymphatic dysplasia, Generalised lymphatic dysplasia, Multi-systemic lymphedema with systemic involvement; Syndromes associated with lymphedema: Noonan/CFC syndrome (RASOpathies), Turner syndrome, 22q13 microdeletion, Microcephaly with or without Chorioretinopathy, Lymphedema and Mental Retardation 8 HCP BE, Mechelen, GIACOLONE Guido Centers cooperating Members BE, Leuven, THOMIS Sarah (ongoing development) DE, Freiburg, ROSSLER Jochen DE, Hinterzarten, FOLDI Etelka PPL-WG FI, Helsinki, SUOMINEN Sinikka FR, Montpellier, QUERE Isabelle FR, Paris, VIGNES Stephane NT, Drachten, DAMSTRA Robert, Chair UK, Derby, KEELEY Vaughan UK, London, MANSOUR Sahar, Co-chair 9

  10. Vascular Anomalies VASCA-WG venous malformation, cutaneo-mucosal venous malformation, Blue Rubber Bleb Nevus syndrome, lymphatic malformation, capillary malformation, arteriovenous malformation, diffuse capillary malformation with hypertrophy, capillary malformation-arteriovenous Rare Diseases malformation , capillary-venous malformation , Parkes-Weber syndrome , Sturge-Weber syndrome , glomuvenous malformation, capillaro-lymphatic-venous malformation, Maffucci syndrome , CLOVES syndrome, Proteus syndrome , Macrocephaly-capillary malformation, Cutis Marmorata Telangiectatica Congenital, PTEN hamartoma tumor syndrome , cerebral cavernous malformation with or without hyperkeratotic cutaneous capillary-venous malformations, verrucous venous malformation , hereditary haemorrhagic telangiectasias , generalized lymphatic anomaly , Gorham-Stout syndrome , infantile hemangioma , rapidly involuting congenital hemangioma , non-involuting congenital hemangioma, etc. 7 HCP Members BE, Brussels, Laurence BOON & Centers cooperating VIKKULA Miikka, Chair (ongoing development) VASCA-WG FI, Helsinki, SALMINEN Päivi SP, Barcelona, BASELGA DE, Freiburg, ROSSLER Jochen Eulalia IT, Rome, DIOCIAIUTI Andrea FR, Caen, DOMPMARTIN IR, Dublin, IRVINE Alan Anne NT, Nijmegen, SCHULTZEKOHL Leo, FR, Montpellier, QUERE Co-chair Isabelle NT, VAN DEN BOSCH Caroline, Patient IT, Milan, VAGHI Massimo rep 10 SW, Stockholm, GHAFFARPOUR Nader

  11. Communication WG (COM-WG) BE, Ghent, DE BACKER Julie (team member: Members DE HOSSON Michèle) FR, Paris, HURARD Marine COM-WG FR, Paris, JONDEAU Guillaume IT, EPAG, RESTAINO Raffaella NEED A IT, Milan, PINI Alessandro CHAIR & NT, Utrecht, MAGER Hans-Jurgen A CO- NT, Patient rep, VAN DER VELDEN Ange CHAIR SP, EPAG, BOTELLA Luisa-María 11

  12. eHealth WG Members IT, Milan, PINI Alessandro, Chair Center cooperating SP, EPAG, BOTELLA Luisa-María SP, BASELGA Eulalia UK, London, SHOVLIN Claire (team member : eHealth-WG Ben GLAMPSON) NEED A CO CHAIR 12

  13. Ethics WG Members IT, Pavia, ARBUSTINI Eloisa / FAVALLI Valentina IT, Milan, PINI Alessandro DE, EPAG, GRABOWSKI Christina Ethics-WG NT, Patient rep, VAN DER VELDEN Ange NEED A CHAIR & A CO- CHAIR 13

  14. Patient Registry WG BE, Leuven, THOMIS Sarah Centers cooperating Members SP, BASELGA Eulalia DE, Hamburg, BEHRENDT Christian-Alexander SP, Barcelona, EVANGELISTA Arturo & FR, Lyon, DUPUIS-GIROD Sophie PR-WG TEIXIDO Gisela FR, Paris, JONDEAU Guillaume FR, Paris, VIGNES Stéphane NEED A HU, Budapest, BENKE Kalman CHAIR & IR, Dublin, IRVINE Alan A CO- IT, Patient rep, CROCIONE Claudia CHAIR IT, Milan, PINI Alessandro NT, Radboudumc, SCHULTZE KOOL Leo NT, Radboudumc, KEMPERS Marlies NT, Rotterdam, VAN DE LAAR Ingrid 14

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