Programme

Allied Health Professionals Day

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

TimeTitleSpeakers
13.30 - 14.15JOINT SESSION - ENGAGING WITH BEHAVIOURAL CHOICE IN CLINICAL PRACTICECHAIR: LOTTE HAVERMAN
13.30 - 13.40PSYCHOSOCIAL PROFESSIONALS: SUPPORTING MOTIVATIONAL INTERVIEWINGGloria Rooney
13.40 - 13.50PHYSIOTHERAPIST: SUPPORTING PHYSICAL ACTIVITY AND REHABILITATIONJohan Blokzijl
13.50 - 14.00NURSE: SUPPORTING AUTONOMOUS CHOICES IN HEALTHY LIVINGHelen Manson
14.00 - 14.15PANEL DISCUSSION
14.15 - 14.30BREAK
TimeTitleSpeakers
14.30 - 17.30NURSES STREAM
14.30 - 15.30SESSION 1 - RESEARCHCHAIR: MARY KAVANAGH
14.30 - 14.50EthicsSimon Fletcher
14.50 - 15.10Conducting nurse-led researchKristi Rannus
15.10 - 15.20LIVE Q&A
15.20 - 15.30Nurse research in practiceMonica Martinez
15.30 - 15.45BREAK
15.45 - 16.05MEET THE COMMITTEECHAIR: LINDA MYRIN WESTESSON
15.45 - 15.55Committee ProjectsEAHAD Nurses Committee
15.55 - 16.05LIVE Q&A
16.05 - 17.30SESSION 2 – ACQUIRED BLEEDING DISORDERSCHAIR: MAJ FRIBERG BIRKEDAL
16.05 - 16.25Acquired von Willebrand DiseaseEugenia Biguzzi
16.25 - 16.40Acquired haemophiliaNanda Uitslager
16.40 - 16.55Immune thrombocytopenic purpuraTanya Duignan
16.55 - 17.05LIVE Q&A
17.05 - 17.12Patient's voice: Parent’s perspective on acquired haemophilia

Kristoffer Kviberg

17.12 - 17.19Patient's voice: Patient’s perspective on acquired haemophiliaAnders Skoog
17.19 - 17.26Patient's voice: Adult patient’s perspective on Immune thrombocytopenic purpuraMerijn Wieringa
TimeTitleSpeakers
14.30 - 17.15PHYSIOTHERAPISTS STREAM
14.30 - 15.10SESSION 1 - NOTHING ABOUT ME, WITHOUT ME: CO-PRODUCTION BETWEEN PATIENTS AND PHYSIOTHERAPISTSCHAIR: PAUL MCLAUGHLIN
14.30 - 14.40What is co-production?Lisa Steadman
Sandra Dodgson
Alex Taylor-Rose
14.40 - 14.50Co-production in self-managementJackie Walumbe
14.50 - 15.00Co-production in researchFerhana Hashem
15.00 - 15.10LIVE Q&A
15.10 - 15.20BREAK
15.20 - 16.00SESSION 2 – ACTIVITIES AND PARTICIPATIONCHAIR: DENISE ETZWEILER
15.20 - 15.30Measuring activities and participation in persons with haemophiliaMerel Timmer
15.30 - 15.40Selecting performance-based test of physical function for monitoring people with haemophiliaDavid Stephensen
15.40 - 15.50Wearables: How do we measure physical activity?Ruth Elise Dybvik Matlary
15.50 - 16.00LIVE Q&A
16.00 - 16.15BREAK
16.15 - 17.15SESSION 3 – SLAMCHAIR: MAGNUS ASPDAHL
16.15 - 16.22IDENTIFYING PERSONS WITH HAEMOPHILIA AT RISK FOR FUNCTIONAL DECLINEJohan Blokzijl
16.22 - 16.29VALIDITY OF THE FOUR-SQUARE STEP TEST IN ASSESSING FUNCTIONAL BALANCE IN PERSONS WITH HAEMOPHILIAStephanie Taylor
16.29 - 16.36THE RELATIONSHIP BETWEEN BALANCE CONFIDENCE, KINESIOPHOBIA AND ANXIETY IN ADULT HAEMOPHILIA PATIENTSSercan Önal Aykar
16.36 - 16.43A BLENDED PHYSIOTHERAPY INTERVENTION FOR PERSONS WITH HAEMOPHILIC ARTHROPATHYMerel Timmer
16.43 - 16.50STAKEHOLDER INVOLVEMENT IN THE DESIGN AND DELIVERY OF A NOVEL TELEREHABILITATION INTERVENTION FOR PAIN MANAGEMENT IN PEOPLE WITH HAEMOPHILIAPaul Mclaughlin
16.50 - 16.57IMMERSIVE VR VISUALIZATION TO IMPROVE QUALITY OF LIFE IN PATIENTS WITH HEMOPHILIC ANKLE ARTHROPATHYRubén Cuesta-Barriuso
16.57 - 17.15LIVE Q&A
TimeTitleSpeakers
14.30 - 17.30PSYCHOSOCIAL PROFESSIONALS STREAM
14.30 - 15.00SESSION 1 - TRANSITION IN TREATMENTSCHAIR: CHRISTINA BURGESS
14.30 - 14.50Gene therapy in clinical practice – choices and challengesPratima Chowdary
14.50 - 15.00LIVE Q&A
15.00 - 15.15BREAK
15.15 - 15.45SESSION 2 – TRANSITION IN CARECHAIR: ANA TORRES ORTUNO
15.15 - 15.35From paediatric to adult careLorynn Teela
15.35 - 15.45LIVE Q&A
15.45 - 16.00BREAK
16.00 - 16.30SESSION 3 – TRANSITION IN MEASUREMENTSCHAIR: PETRA BUCKOVA
16.00 - 16.20Switching from old to new outcome measurementsLotte Haverman
16.20 - 16.30LIVE Q&A
16.30 - 16.45BREAK
16.45 - 17.25SESSION 4 – TRANSITION – A PATIENT’S EXPERIENCECHAIR: KAREN VANDENABEELE
16.45 - 17.15Growing up with haemophilia and how gene therapy influenced my lifeBrian O’Mahony
17.15 - 17.25LIVE Q&A
Timetitlespeakers
16.00 - 17.00GENE THERAPY SATELLITE SYMPOSIUM
18.00 - 19.00SATELLITE SYMPOSIA 1, 2, 3

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

TimeTitleSpeakers
13.45 - 14.00WELCOME AND INTRODUCTIONFLORA PEYVANDI
14.00 - 15.00SESSION 1 - MULTIDISCIPLINARY EDUCATIONAL SESSION – MTD TEAM’S RESPONSE IN TIMES OF DISASTER/CRISISCHAIR: JAN BLATNY
14.00 - 14.10The Katrina disaster and haemophiliaCindy Leissinger
14.10 - 14.20Nurses' response to cyberattacks and its consequences on daily practiceRuth Hunter Nolan
14.20 - 14.30
Delivering rehabilitation for people with bleeding disorders during an energy crisis: the Lebanese experience
Cesar Haddad
14.30 - 14.40WFH response to natural disastersAssad Haffar
14.40 - 14.50Preparing for the next disasterPetr Pavel
14.50 - 15.00LIVE Q&A
15.00 - 15.15BREAK
15.15 - 16.15SESSION 2 – REPLACEMENT THERAPYCHAIR: HERVE CHAMBOST
15.15 - 15.30Which criteria to choose the timing and the product to introduce FVIII in severe haemophilia AChristoph Königs
15.30 - 15.45Immunogenicity of Factor VIIISebastien Lacroix-Desmazes
15.45 - 16.00Are all Factor IX concentrates equal?Cedric Hermans
16.00 - 16.15LIVE Q&A
16.15 - 16.30BREAK
16.30 - 17.30SESSION 3 – NON-REPLACEMENT THERAPIESCHAIR: DAN HART
16.30 - 16.45Current and future productsPeter Collins
16.45 - 17.00Can we personalise dosing for non-replacement therapies?Pal André Holme
17.00 - 17.15Thrombosis and the novel haemophilia therapiesMaureane Hoffman
17.15 - 17.30LIVE Q&A
17.30 - 18.00BREAK
18.00 - 19.00SATELLITE SYMPOSIA 4, 5, 6
19.00 - 19.15BREAK
19.15 - 19.30RECAP OF THE DAY – WEDNESDAYCHAIR: ROBERT KLAMROTH

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

TimeTitleSpeakers
14.00 - 15.00SESSION 4 – GENE THERAPYCHAIR: WOLFGANG MIESBACH
14.00 - 14.15Current status – Efficacy and safetyPaul Batty
14.15 - 14.30Liver disease In haemophilia and impact on gene therapyHeiner Wedemeyer
14.30 - 14.45Future prospects for non-AAV gene and cell therapyThierry Vandendriessche
14.45 - 15.00LIVE Q&A
15.00 - 15.15BREAK
15.15 - 16.15SESSION 5 - VON WILLEBRAND DISEASECHAIR: FARIBA BAGHAEI
15.15 - 15.30Women health in von Willebrand diseaseRiitta Lassila
15.30 - 15.45Prophylaxis in von Willebrand disease – How and Who?Eugenia Biguzzi
15.45 - 16.00Acquired von Willebrand diseaseSophie Susen
16.00 - 16.15LIVE Q&A
16.15 - 16.30BREAK
16.30 - 17.30SESSION 6 – DELIVERY OF CARECHAIR: ANA BOBAN
16.30 - 16.45European adoption of the von Willebrand disease guidelinesFrank Leebeek
16.45 - 17.00European accreditation of haemophilia and gene therapy centresAna Boban
17.00 - 17.15EUHASS UpdateMichael Makris
17.15 - 17.30LIVE Q&A
17.30 - 18.00BREAK
18.00 - 19.00SATELLITE SYMPOSIA 7, 8, 9
19.00 - 19.15BREAK
19.15 - 19.30RECAP OF THE DAY – THURSDAYCHAIR: FLORA PEYVANDI

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

TimeTitleSpeakers
14.00 - 15.00SESSION 7 - SLAMCHAIR: ROBERT KLAMROTH
14.00 - 14.07IDENTIFYING PERSONS WITH HAEMOPHILIA AT RISK FOR FUNCTIONAL DECLINEJohan Blokzijl
14.07 - 14.14SELECTION OF IMMUNO-DOMINANT T CELL EPITOPES FROM THE REPERTOIRE OF FVIII DERIVED PEPTIDES PRESENTED ON MHC CLASS IIMariarosaria Miranda
14.14 - 14.21LIVER-RELATED COMPLICATIONS DURING LONG-TERM HEPATITIS C VIRUS INFECTION AND AFTER SUCCESSFUL ANTIVIRAL TREATMENT IN PEOPLE WITH INHERITED BLEEDING DISORDERSCas Isfordink
14.21 - 14.28HMB-001 - A NOVEL BISPECIFIC ANTIBODY WITH POTENTIAL FOR SUBCUTANEOUS PROPHYLACTIC TREATMENT OF MULTIPLE BLEEDING DISORDERS - INITIAL FOCUS ON GLANZMANN THROMBASTHENIA (GT)Prafull Gandhi
14.28 - 14.35MOST AFFECTED JOINTS IN PATIENTS WITH HAEMOPHILIA – WHAT HAS CHANGED AFTER 20 YEARS IN GERMANY?Jamil Hmida
14.35 - 14.42POSTPARTUM HEMORRHAGE IN PATIENTS WITH RARE BLEEDING DISORDERS IN THE NETHERLANDS: REAL-LIFE DATA FROM THE RBIN STUDYDominique Maas
14.42 - 15.00LIVE Q&A
15.00 - 15.15BREAK
15.15 - 15.45SESSION 8 - AROSENIUS LECTURECHAIR: MARÍA TERESA ALVAREZ-ROMÁN

15.15 - 15.45

WHAT IS THE "TRUE" RATE OF INHIBITOR DEVELOPMENT IN HAEMOPHILIA?

Rolf Ljung
15.45 - 16.05SESSION 9 - EAHAD SUPPORTED RESEARCHCHAIR: KARIN FIJN VAN DRAAT

15.45 - 15.55

"DEVELOPMENT OF A NOVEL GENE THERAPY APPROACH FOR GLANZMANN THROMBASTHENIA (GT): ASSESSMENT IN CRISPR GT CELL MODEL, GT PATIENT PROGENITOR CELLS, AND NBSGW IMMUNODEFICIENT MICE" - 2020 RESEARCH GRANT PROJECT REPORTJose Rivera

15.55 - 16.05

“GETTING GRIP ON TOLERANCE: THE ROLE OF FC GAMMA RECEPTORS IN 
IMMUNE TOLERANCE TO PROTEIN THERAPEUTICS” THE IMPACT OF COVID-19 ON RESEARCH
Ilja Oomen
16.05 - 16.20BREAK
16.20 - 17.30SESSION 10 - LATEST CLINICAL TRIAL RESULTSCHAIR: FLORA PEYVANDI
16.20 - 16.30FINAL ANALYSIS FROM THE PIVOTAL PHASE 3 HOPE-B GENE THERAPY TRIAL: STABLE STEADY-STATE EFFICACY AND SAFETY OF ETRANACOGENE DEZAPARVOVEC IN ADULTS WITH SEVERE OR MODERATELY SEVERE HEMOPHILIA BWolfgang Miesbach
16.30 - 16.40FITUSIRAN, AN INVESTIGATIONAL siRNA THERAPEUTIC TARGETING ANTITHROMBIN FOR THE TREATMENT OF HAEMOPHILIA: FIRST RESULTS FROM A PHASE 3 STUDY TO EVALUATE EFFICACY AND SAFETY IN PEOPLE WITH HAEMOPHILIA A OR B WITHOUT INHIBITORS (ATLAS-A/B)Robert Klamroth
16.40 - 16.50SerpinPC IS WELL-TOLERATED AND REDUCES BLEEDING IN PERSONS WITH SEVERE HAEMOPHILIA (PWH) IN A 24 WEEK REPEAT DOSE STUDY - AP-0101 - Ph2aTrevor Baglin
16.50 - 17.00CASES OF DECREASED FVIII ACTIVITY (FVIII:C) IN PREVIOUSLY TREATED PATIENTS (PTP) DURING POST-MARKETING SURVEILLANCE OF N8-GPJohannes Oldenburg
17.00 - 17.10EMICIZUMAB PROPHYLAXIS IN PEOPLE WITH MILD OR MODERATE HAEMOPHILIA A WITHOUT FACTOR VIII INHIBITORS: RESULTS FROM THE INTERIM ANALYSIS OF THE HAVEN 6 STUDY


Johannes Oldenburg

17.10 - 17.20EFFICACY AND SAFETY OF VALOCTOCOGENE ROXAPARVOVEC GENE TRANSFER FOR SEVERE HEMOPHILIA A: RESULTS FROM THE GENER8-1 TWO-YEAR ANALYSIS

Johnny Mahlangu

17.20 - 17.30LIVE Q&A
17.30 - 18.00BREAK
18.00 - 19.00SATELLITE SYMPOSIA 10, 11, 12
19.00 - 19.15BREAK
19.15 -  19:30RECAP OF THE DAY – FRIDAYCHAIR: MIKE MAKRIS
CLOSING REMARKSFLORA PEYVANDI
ROBERT KLAMROTH
MIKE MAKRIS