Programme

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Allied Health Professionals Day

Time: Central European Time (CET), UTC/GMT +1

TimeTitleSpeakers
14.00 - 14.30JOINT SESSION - "ZOOM OR ROOM" - ADAPTING SERVICES FOR THE FUTURE

CHAIR: PAULA LOUGHNANE

14.00 - 14.05WELCOME
14.05 - 14.20PANEL PRESENTATION BY THE DUBLIN HAEMOPHILIA CENTERSheila Roche
Shona Brady
Patricia Byrne
Mairéad O’Donovan
14.20 - 14.30LIVE Q&A
14.30 - 14.45BREAK
TimeTitleSpeakers
14.45 - 17.35NURSES STREAM
14.45 - 16.15BEHAVIOURAL ISSUESCHAIR: ELSBETH MULLER-KAGI
14.45 - 14.55EXPLANATION OF DIAGNOSISNina Jurander
14.55 - 15.40PATIENT'S PERSPECTIVEAdam Harris
15.40 - 16.00NURSING AND BEHAVIOURAL ISSUESNina Jurander
16.00 - 16.10LIVE Q&A
16.10 - 16.25BREAK
16.25 - 17.35HOT TOPICSCHAIR: SIMON FLETCHER
16.25 – 16.35GENE THERAPY, NURSE'S PERSPECTIVEGreta Mulders
16.35 - 16.50GENE THERAPY, PATIENT'S PERSPECTIVELuke Pembroke
16.50 - 17.15SUBCUTANEOUS, PATIENT'S PERSPECTIVEPeter Sinclair
17.15 - 17.35LIVE Q&A
TimeTitleSpeakers
14.45 - 17.20PHYSIOTHERAPISTS STREAM
14.45 - 15.45SLAM SESSIONCHAIR: MARIE KATZEROVA
14.45 - 14.52DIFFERENTIATING JOINT BLEEDING AND HAEMOPHILIA ARTHROPATHY – A QUALITATIVE STUDYDavid James Hopper
14.52 - 14.59THERAPEUTIC EXERCISE WITH TELEREHABILITATION DURING SARS- COV-2 LOCKDOWN IN ITALYValentina Begnozzi
14.59 - 15.06POTENTIAL POINTS OF IMPROVEMENT OF PRIMARY CARE PHYSIOTHERAPY FOR PERSONS WITH HAEMOPHILIAJohan Blokzijl
15.06 - 15.13OCCUPATIONAL THERAPY (OT) A NEW VOICE IN HAEMOPHILIAClaire Forde
15.13 - 15.20FEASIBILITY STUDY OF AN EDUCATION AND EXERCISE CLASS FOR HAEMOPHILIA PATIENTS ATTENDING THE NATIONAL COAGULATION CENTRE DUBLINSheila Roche
15.20 - 15.27MANUAL THERAPY IN THE TREATMENT OF PATIENTS WITH HEMOPHILIC ELBOW ARTHROPATHY: A RANDOMIZED CLINICAL TRIALRubén Cuesta-Barriuso
15.27 - 15.45LIVE Q&A
15.45 - 16.00BREAK
16.00 - 17.20MOTIVATION FOR PHYSICAL ACTIVITY IN THE AGE OF NEW TREATMENTS - PAEDIATRICS, YOUNGER ADULTS, OLDER ADULTSCHAIR: PAUL MCLAUGHLIN
16.00 - 16.05CHAIR INTRO
16.05 - 16.25PAEDIATRICSNathalie Grinda
16.25 - 16.45YOUNGER ADULTSOlav Versloot
16.45 - 17.05OLDER ADULTSFionnuala Sayers
17.05 - 17.20LIVE Q&A
TimeTitleSpeakers
14.45 - 17.20PSYCHOSOCIAL PROFESSIONALS STREAM
14.45 - 15.40IS IT COMPREHENSIVE MDT CARE WITHOUT A PSYCHOLOGIST OR SOCIAL WORKER?CHAIR: GLORIA ROONEY
14.45 - 15.30PANEL DISCUSSIONSPEAKERS:

Karolien Bartels

Patrick De Smet

Aurelie Finders-Binje

Niamh Larkin

Mark Mcgowan

Niamh O’Connell

Karen Vandenabeele

15.30 - 15.40LIVE Q&A
15.40 - 15.55BREAK
15.55 - 16.30IMPACT OF COVID-19 ON HEALTHCARE PROFESSIONALS AND PATIENTSChristina Burgess
Petra Buckova
15.55 - 16.20IMPACT OF COVID-19 ON HEALTHCARE PROFESSIONALS AND PATIENTS
16.20 - 16.30LIVE Q&A
16.30 - 16.45BREAK
16.45 - 17.20TRANSITION: HOW TO COPE WITH THE NEW "NORMALITY" FROM A PSYCHOSOCIAL PERSPECTIVEAna Torres Ortuno
Gaby Golan
16:45 - 17:10TRANSITION: HOW TO COPE WITH THE NEW "NORMALITY" FROM A PSYCHOSOCIAL PERSPECTIVE.
17.10 - 17.20LIVE Q&A
TimeTitleSpeakers
18.00 - 19.00SATELLITE SYMPOSIA 1, 2, 3
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Time: Central European Time (CET), UTC/GMT +1

TimeTitleSpeakers
WELCOME AND INTRODUCTION

FLORA PEYVANDI

14.00 - 15.00SESSION 1 - MULTIDISCIPLINARY HAEMOPHILIA EDUCATIONAL SESSION - E-HEALTH

CHAIRS:
KARIN FIJNVANDRAAT

SAMANTHA GOUW

14.00 - 14.02INTRODUCTION
14.02 - 14.22VISION ON HEALTH CARE OF THE FUTURELucien Engelen
14.22 - 14.32ELECTRONIC HEALTH RECORDS - THE PATIENT PERSPECTIVEBrian O'Mahony
14.32 - 14.42VIDEOCONSULTATIONSMarlene Beijlevelt
14.42 - 14.52WEARABLE SENSOR TECHNOLOGY FOR MUSCULOSKELETAL AND PHYSICAL HEALTHDavid Stephensen
14.52 - 15.00LIVE Q&A
15.00 - 15.15BREAK
15.15 - 16.15SESSION 2 - NOVEL THERAPIES IN HAEMOPHILIACHAIR:
HERVE CHAMBOST
15.15 - 15.30WILL THERE BE A ROLE FOR FACTOR VIII CONCENTRATE IN HAEMOPHILIA IN THE FUTURE?David Lillicrap
15.30 - 15.45COMPARATIVE SAFETY OF STANDARD AND NOVEL THERAPIES (INHIBITORS, PEGYLATION, THROMBOSIS)Dan Hart
15.45 - 16.00ROLE OF NOVEL THERAPIES IN JOINT HEALTH IN HAEMOPHILIA: HOW TO MONITORRoberta Gualtierotti
16.00 - 16.15LIVE Q&A
16.15 - 16.30BREAK
16.30 -  17:30SESSION 3 - GENE THERAPY IN HAEMOPHILIACHAIR:
WOLFGANG MIESBACH
16.30 - 16.45GENE THERAPY IN HAEMOPHILIA - WHERE ARE WE NOW?Glenn Pierce
16.45 - 17.00IS LONG TERM TOXICITY AN ISSUE?Denise Sabatino
17.00 - 17.15DELIVERY OF GENE THERAPY IN HAEMOPHILIA IN EUROPEDeclan Noone
17.15 - 17.30LIVE Q&A
17.30 - 18.00BREAK
18.00 - 19.00SATELLITE SYMPOSIAClick HERE for the detailed programme
19.00 - 19.15BREAK
19.15 -  19:50WEDNESDAY RECAP SESSIONCHAIR:
ROBERT KLAMROTH
19.15 - 19.30RECAP OF THE DAY
19.30- 19.50OPEN DISCUSSION AND Q&A

Time: Central European Time (CET), UTC/GMT +1

TimeTitleSpeakers
14.00 - 15.00SESSION 4 - BLEEDING DISORDERSCHAIR:
ANA BOBAN
14.00 - 14.15GENETICS AND BLEEDING DISORDERSRosanna Asselta
14.15 - 14.30DO WE HAVE A PROBLEM WITH THE DIAGNOSIS OF BLEEDING DISORDERS IN WOMEN AND GIRLS?Roseline d’Oiron
14.30 - 14.45TYPE 3 VON WILLEBRAND DISEASEJeroen Eikenboom
14.45 - 15.00LIVE Q&A
15.00 - 15.15BREAK
15.15 - 16.15SESSION 5 - COVID-19 AND HAEMOSTASISCHAIR:
DAN HART
15.15 - 15.35COVID-19 AND HAEMOPHILIAVictor Jimenez Yuste
15.35 - 15.55THROMBOSIS AND COVID-19James O'Donnell
15.55 - 16.15LIVE Q&A
16.15 - 16.30BREAK
16.30 - 17:30SESSION 6 - PAEDIATRICS AND PLATELET DISORDERSCHAIR:
JAN BLATNY
16.30  -16.45WHAT CAUSES INHIBITORS IN PUPS?Debbie Brown
16.45 - 17.00EMICIZUMAB USE IN PUPS AND CHILDRENGili Kenet
17.00 - 17.15SUSPECTED INHERITED THROMBOCYTOPENIA: NGS OR PERIPHERAL BLOOD SMEAR?Andreas Greinacher & Carlo Zaninetti
17.15 - 17.30LIVE Q&A
17.30 - 18.00BREAK
18.00 - 19.00SATELLITE SYMPOSIA

Click HERE for the detailed programme

19.00 - 19.15BREAK
19.15 -  19:50THURSDAY RECAP SESSIONCHAIR:
FLORA PEYVANDI
19.15 - 19.30RECAP OF THE DAY
19.30- 19.50OPEN DISCUSSION AND Q&A

Time: Central European Time (CET), UTC/GMT +1

TimeTitleSpeakers
14.00 - 15.00SESSION 7 - SLAMCHAIR:
ROBERT KLAMROTH
14.00 - 14.07FACTOR IX ASSAY DISCREPANCY IN NON-SEVERE HEMOPHILIA B – A CROSS-SECTIONAL STUDY IN THE NETHERLANDSFabienne R. Kloosterman
14.07 - 14.14CHARACTERISATION OF ADENO-ASSOCIATED VIRUS VECTOR PERSISTENCE AFTER LONG-TERM FOLLOW UP IN THE HAEMOPHILIA A DOG MODELPaul Batty
14.14 - 14.21TRANSPLACENTAL DELIVERY OF FC-FUSED FACTOR VIII (RFVIIIFC) IN FVIII-DEFICIENT MICESandrine Delignat
14.21 - 14.28PEOPLE WITH HAEMOPHILIA INCLUDING FEMALE CARRIERS IN NORDIC COUNTRIES DIE AT AN EARLIER AGE AND HAVE SIGNIFICANT CO-MORBIDITIESStefan Lethagen
14.28 - 14.35PERIOPERATIVE MANAGEMENT OF PATIENTS WITH HEMOPHILIA (PWH) RECEIVING FITUSIRAN PROPHYLAXIS WITH REDUCED DOSES OF BPA OR FACTOR REPLACEMENTMargaret V. Ragni
14.35 - 14.42LOWERING THE BURDEN OF DESMOPRESSIN TESTING IN VON WILLEBRAND DISEASE AND LOW VWFJessica Heijdra
14.42 - 15.00LIVE Q&A
15.00 - 15.15BREAK
15.15 - 15.45SESSION 8 - AROSENIUS LECTURECHAIR:
FARIBA BAGHAEI
15.15 - 15.45.PROPHYLAXIS IN HAEMOPHILIAMarilyn Manco-Johnson
15.45 - 16.15SESSION 9 - EAHAD SUPPORTED RESEARCHCHAIR:
MICHAEL MAKRIS
15.45 - 15.55

“TOWARDS A BETTER UNDERSTANDING OF ANKLE PAIN IN HAEMOPHILIA PATIENTS: A STUDY EXAMINING THE RELATIONSHIP BETWEEN STRUCTURE AND FUNCTION, TAKING PAIN MECHANISMS INTO ACCOUNT” - 2019 RESEARCH GRANT PROJECT REPORT

Nathalie Roussel

15.55 - 16.05

“GETTING GRIP ON TOLERANCE: THE ROLE OF FC GAMMA RECEPTORS IN IMMUNE TOLERANCE TO PROTEIN THERAPEUTICS” - 2019 RESEARCH GRANT PROJECT REPORT

Ilja Oomen

16.05 - 16.15THE EDUCATIONAL PROGRAM ON FACTOR VIII IMMUNOGENICITY - EDUC8Sebastien Lacroix Desmazes
16.15 - 16.30BREAK
16.30 - 17.30SESSION 10 - LATEST CLINICAL TRIAL RESULTSCHAIR:
FLORA PEYVANDI
16.30 - 16.37EFFICACY AND SAFETY OF ETRANACOGENE DEZAPARVOVEC IN ADULTS WITH SEVERE OR MODERATE-SEVERE HEMOPHILIA B: FIRST DATA FROM THE PHASE 3 HOPE-B GENE THERAPY TRIALSteven W Pipe
16.37 - 16.44SAFETY AND LONGER-TERM EFFICACY OF CONCIZUMAB PROPHYLAXIS IN PATIENTS WITH HAEMOPHILIA A OR B WITH INHIBITORS: RESULTS FROM THE EXTENSION PART OF THE PHASE 2 EXPLORER4 TRIALAmy Shapiro
16.44 - 16.51SPK-8016: PRELIMINARY RESULTS FROM A PHASE 1/2 CLINICAL TRIAL OF GENE THERAPY FOR HEMOPHILIA ASpencer K Sullivan
16.51 - 16.58EFFICACY AND SAFETY OF A RECOMBINANT VON WILLEBRAND FACTOR TREATMENT IN PATIENTS WITH INHERITED VON WILLEBRAND DISEASE REQUIRING SURGICAL PROCEDURES: A FRENCH MULTICENTRE RETROSPECTIVE STUDYNicolas Drillaud
16.58 - 17.05SERPINPC IS SAFE AND REDUCES BLEEDING IN PERSONS WITH SEVERE HAEMOPHILIA (PWH) IN A SINGLE ASCENDING DOSE (SAD) STUDY - AP-0101Trevor Baglin
17.05 - 17.12FITUSIRAN, AN siRNA THERAPEUTIC TARGETING ANTITHROMBIN FOR THE TREATMENT OF HEMOPHILIA: PROPOSED REVISIONS TO DOSE AND REGIMEN AS A RISK MITIGATION FOR VASCULAR THROMBOSISShauna Andersson
17.12 - 17.30LIVE Q&A
17.30 - 18.00BREAK
18.00 - 19.00SATELLITE SYMPOSIAClick HERE for the detailed programme
19.00 - 19.15BREAK
19.15 -  19:50FRIDAY RECAP SESSIONCHAIR:
MICHAEL MAKRIS
19.15 - 19.30RECAP OF THE DAY
19.30- 19.50OPEN DISCUSSION AND Q&A