Programme

Mobile App information: All registered delegates will receive separate instructions on how to download the EAHAD 2020 Mobile App. To use the Mobile App, you will be required to register by completing a small questionnaire, which will allow you to make use of the implemented match-making system and take part in the voting & Q&A during sessions.

Multidisciplinary Pre-Congress Day | Programme as of 4 November 2019

12:00 – 13:00 REGISTRATION AND LUNCH
13:00 – 13:45 JOINT SESSION: Insight into the care of patients with rare bleeding disorders in the Netherlands
13:00 – 13:15 Welcome and Introduction K Fijn van Draat
13:15 – 13:45 Panel discussion:

Multidisciplinary and interdisciplinary care in the Netherlands: Differences, opportunities and challenges

Chair: P de Kleijn

S Andeweg
G Mulders
M Timmer
L Haverman

14:00 – 19:00 NURSES SESSIONS
14:00 – 15:00 SESSION 1: Nurse-led research: Stepping out of your comfort zone Chair: S Fletcher
14:00 – 14:20 How to create a good poster & how to choose a research topic L Myrin Westesson
14:20 – 14:55 SLAM session
  • TWO TAILORED INTERVENTIONS TO IMPROVE ACCEPTANCE AND SELF-MANAGEMENT IN ADULTS WITH SEVERE HAEMOPHILIA: ONE SUCCESSFUL, ONE UNSUCCESSFUL
  • J W Hoefnagels
  • EXPLORING THE EDUCATIONAL AND TRAINING NEEDS OF NURSES WORKING WITH PEOPLE WITH CONGENITAL AND/OR ACQUIRED COAGULOPATHIES IN SPAIN
  • S García-Barcenilla
  • A SURVEY FOR DRUG INFUSION PRACTICES AND SELF-RATED HEALTH ASSESSMENT OF THE PATIENTS WITH HEMOPHILIA
  • T Aksu
  • NURSES EXPERIENCES OF MASS PRODUCT SWITCHING
  • D Pollard
  • HEMOVE - THE HEMOPHILIA LIFESTYLE COACH - AN EXTRAORDINARY PILOT PROJECT
  • A Devos
14:55 – 15:00 Interview and roundtable discussion with SLAM presenters
15:00 – 15:30 Break
15:30 – 17:00 SESSION 2: Bleeding disorders within the family Chair: S Grønhaug
15:30 – 16:00 Family legacy: Theoretical input G O’Brien
16:00 – 16:30 Family legacy: Learning from cases N Uitslager
16:30 – 17:00 Patients’ perspective: Interview with two women with bleeding disorders N Uitslager
M van der Ven
M Degenaar
17:00 – 17:30 Break
17:30 – 19:00 SESSION 3: Facilitating resilience and promoting mindfulness Chair: M Kavanagh
17:30 – 18:20 Facilitating resilience in nurses and patients P Bučková
18:20 – 19:00 Closing remarks & Evaluation E Müller-Kägi
14:00 – 19:00 PHYSIOTHERAPISTS SESSIONS
14:00 – 15:15 SESSION 1: What are the challenges for the physiotherapist today? Chair: R E Matlary
14:00 – 14:20 Differentiating between osteoarthritis and haemophilic arthropathy L Van Vulpen
14:20 – 14:40 Establishing a joint injection clinic – perspectives of the physiotherapist M Bladen
14:40 – 15:00 Clinical implications of early detection of haemophilic arthropathy L Van Vulpen
15:00 – 15:15 Discussion with the audience
15:15 – 15:30 Break
15:30 – 17:00 SESSION 2: Free Paper session Chair: S Lobet
15:30 – 16:40 10-minute Free Paper presentations
  • PHYSICAL ACTIVITY AND CARDIOMETABOLIC RISK PROFILES AMONGST IRISH ADULTS WITH SEVERE HAEMOPHILIA: THE IRISH PERSONALISED APPROACH TO THE TREATMENT OF HAEMOPHILIA (IPATH) STUDY
  • M Kennedy
  • PROJECT GYM: PROMOTING FITNESS IN HAEMOPHILIA
  • P Mclaughlin
  • DOLPHIN: DEVELOPMENT OF A HAEMOPHILIA PHYSIOTHERAPY INTERVENTION FOR OPTIMUM MUSCULOSKELETAL HEALTH – INTERIM RESULTS OF A RANDOMISED CONTROLLED TRIAL
  • D Stephensen
  • IDENTIFYING PERFORMANCE-BASED OUTCOME MEASURES OF PHYSICAL FUNCTION IN PEOPLE WITH HAEMOPHILIA (IPOP)
  • M Bladen
  • RELIABILITY OF THE ISTEP IN CHILDREN WITH HAEMOPHILIA
  • D Chugh
  • 499 HEMOPHILIA JOINT HEALTH SCORES (HJHS): PERFORMANCE OF THE HJHS IN DIFFERENT POPULATIONS
  • I Kuijlaars
  • PREVALENCE OF HAEMARTHROSIS AND CLINICAL IMPACT ON THE MUSCULOSKELETAL SYSTEM IN PEOPLE WITH HAEMOPHILIA IN THE UNITED KINGDOM; EVALUATION OF UKHCDO AND HAEMTRACK PATIENT REPORTED DATA
  • R Wilkins
16:40 – 16:55 Discussion with the audience
16:55 – 17:00 Announcement of the winners
17:00 - 17:15 Break
17:15 – 18:45 SESSION 3: Hot Topic Debates Chair: P McLaughlin
17:15 – 17:45 Is ultrasound really helpful in clinical consultation or is it a trend? M Aspdahl – YES, it is helpful
D Stephensen – NO, it is a trend
17:45 – 17:50 Announcement of the winner
17:50 – 18:20 Should haemophilia patients attend physiotherapy sessions in their own HTC? E Mauser-Bunschoten – YES
P de Kleijn – NO
18:20 – 18:25 Announcement of the winner
18:25 – 18:55 “Give a man a fish and you feed him for a day; teach a man to fish and you feed him for life”: Manual therapy VS self-rehabilitation T Flannery – Manual therapy
S Lobet – Self-rehabilitation
18:55 – 19:00 Announcement of the winner
14:00 – 19:00 PSYCHOSOCIAL SESSIONS
14:00 – 15:20 SESSION 1: Relevant issues regarding well-being from childhood to adulthood Chair: A Torres Ortuño
14:00 – 14:30 Children with bleeding disorders: what a child psychologist can do to help K Vandenabeele
14:30 – 14:40 Questions and discussion
14:40 – 15:10 My experience of running Wellbeing Workshops C Burgess
15:10 – 15:20 Questions and discussion
15:20 – 15:50 Break
15:50 – 17:50 SESSION 2: Psychological strategies to manage pain and promote sexual health Chair: C Burgess
15:50 – 16:20 Principles of pain management in haemophilia patients G Golan
16:20 – 16:30 Questions and discussion
16:30 – 17:00 EMDR used for pain management C de Roos
17:00 – 17:10 Questions and discussion
17:10 – 17:40 Sexuality and haemophilia E Laan
17:40 – 17:50 Questions and discussion
17:50 – 18:20 Break
18:20 – 19:00 SESSION 3: Shaping psychosocial haemophilia care in Europe Chair: L Haverman
18:20 – 18:50 Brainstorming session on building a network of psychosocial professionals in Europe: What can the EAHAD Psychosocial Group do for you? All
18:50 – 19:00 Closing remarks L Haverman
19:00 – 21:00 Networking Reception Dinner
09:30 – 11:00 MULTIDISCIPLINARY EDUCATIONAL SESSION:
Managing Woman-Specific Bleeding Issues
Chairs:

K van Galen
R d’Oiron
M Degenaar

09:30 – 10:15 Case 1 – Adolescent woman with an inherited bleeding disorder (BD) – Life stage challenges
  • Nurse perspective – How to prepare girls with BD for their menarche
  • P Elfvinge
  • Psychologist perspective – How to address adolescents’ concerns on heavy menstrual bleeding and future pregnancy
  • L Haverman
  • Gynaecologist perspective – Management of heavy menstrual bleeding in adolescence – the added value of a joint clinic
  • I Tsimpanakos
10:15 – 11:00 Case 2 – Adult woman with an inherited BD who is actively trying to get pregnant
  • Psychosexual therapist perspective – Sexarche and after
  • E Laan
  • Geneticist perspective – Preconception counselling – genetic aspects
  • D Fransen van de Putte
  • Haematologist perspective – Management of pregnancy in haemophilia B – most important things to consider
  • R d’Oiron
11:00 – 11:30 Coffee Break
11:30 – 18:30 INDUSTRY SPONSORED SESSIONS
11:30 – 12:45 Industry sponsored sessions
12:45 – 13:45 Lunch Break
13:45 – 15:00 Industry sponsored sessions
15:00 – 15:30 Coffee Break
15:30 – 16:45 Industry sponsored sessions
16:45 – 17:15 Coffee Break
17:15 – 18:30 Industry sponsored sessions
18:30 – 19:30 Welcome Reception and Poster Presentations
08:30 – 08:45 Welcome and Introduction K Fijn van Draat

M Makris

08:45 – 09:15 SESSION 1: Next Nature
08:45 – 09:15 Next Nature – Why Technology Is Our Natural Future K van Mensvoort
09:15 – 10:45 SESSION 2: Therapeutic Landscapes Chairs:

F Peyvandi
M Coppens

09:15 – 09:45 Current therapeutic landscape for haemophilia F Peyvandi
09:45 – 10:15 Future therapeutic landscape for haemophilia P Collins
10:15 – 10:45 Gene therapy W Miesbach
10:45 – 11:15 Coffee Break/Poster Viewing
11:15 – 13:00 SESSION 3: Dilemmas in PUPs and Paediatric Patients Chairs:

H Chambost
S Gouw

11:15 – 11:30 Case presentation: Clinical dilemmas in a newborn with haemophilia A N Gretenkort Andersson
11:30 – 12:00 PUP treatment and immune tolerance induction treatment M Mancuso
12:00 – 12:30 Gene therapy for children, ethical aspects R van der Graaf
12:30 – 13:00 Uncertainties in the era of new treatments: What patients think the safeguards should be C Smit
13:00 – 14:00 Lunch Break/Poster Viewing/EAHAD Annual General Meeting
14:00 – 15:30 SESSION 4: Diagnostic Discoveries Chairs:

W Miesbach
J Voorberg

14:00 – 14:30 Future diagnostics of platelet disorders K Freson
14:30 – 15:00 Predicting joint damage L van Vulpen
15:00 – 15:30 Monitoring novel therapeutics P Lenting
15:30 – 16:00 Break
16:00 – 17:45 SESSION 5: Von Willebrand Factor/Disease: Throughout Real Life Chair:

R Lassila

16:00 – 16:15 Case presentation: Clinical dilemmas in a patient with VWD M Kruip
16:15 – 16:45 Circle of life of VWD patients F Leebeek
16:45 – 17:15 Low VWF M Lavin
17:15 – 17:45 PK of perioperative treatment in VWD patients G Castaman
19.00 – 23:00 Networking Evening
08:30 – 10:00 SESSION 6: SLAM Chairs:

M Makris
K Fijn van Draat

V Jiménez Yuste

OR01 FIFTY YEARS OF HEMOPHILIA IN THE NETHERLANDS S Hassan
OR02 TREATMENT OF GIRLS AND WOMEN WITH HAEMOPHILIA A AND HAEMOPHILIA B: A RETROSPECTIVE STUDY IN THE FRANCECOAG COHORT M Viprey
OR03 THE TREATMENT HISTORY OF NON-SEVERE HEMOPHILIA A F R Kloosterman
OR04 REPORT ON THE ANNUAL GLOBAL SURVEY – 20 YEARS ON AND MORE INFORMATIVE A Iorio
OR05 IMPACT OF HEPATITIS C INFECTION ON BONE MICROSTRUCTURE OF PATIENTS WITH HAEMOPHILIA (PWH) K Holstein
OR06 POPULATION PHARMACOKINETIC MODELLING OF VON WILLEBRAND FACTOR ACTIVITY LEVELS DURING PERIOPERATIVE DOSING OF A VWF/FVIII CONCENTRATE IN VON WILLEBRAND DISEASE L H Bukkems
OR07 PHASE 2B TRIAL TO EVALUATE THE SAFETY AND FACTOR IX LEVELS RESULTING FROM A DAILY SUBCUTANEOUS PROPHYLAXIS TREATMENT REGIMEN OF DALCINONACOG ALFA (DALCA) IN HEMOPHILIA B J Mahlangu
OR08 FITUSIRAN, AN RNAI THERAPEUTIC TARGETING ANTITHROMBIN FOR THE TREATMENT OF HEMOPHILIA: MANAGEMENT OF BREAKTHROUGH BLEEDING EVENTS S W Pipe
OR09 RURIOCTOCOG ALFA PEGOL PK-GUIDED PROPHYLAXIS TARGETING TWO FVIII TROUGH LEVELS IN SEVERE HEMOPHILIA A PATIENTS (PROPEL PHASE 3 STUDY): IMPACT OF PATIENT FVIII HALF-LIFE ON CONSUMPTION AND EFFICACY OUTCOMES J Windyga
OR10 ONE YEAR DATA FROM A PHASE 2B TRIAL OF AMT-061 (AAV5-PADUA HFIX VARIANT), AN ENHANCED VECTOR FOR GENE TRANSFER IN ADULTS WITH SEVERE OR MODERATE-SEVERE HEMOPHILIA B S W Pipe
10:00 – 10:30 Coffee Break/Poster Viewing
10:30 – 11:30 SESSION 7: Debate: Do we really need PK-based management? Chairs:

J Blatny
K Meijer

YES, PK improves outcomes M Cnossen
NO, we don’t need PK to improve outcomes D Hart
11:30 – 12:00 EAHAD Update Chair:

C Hermans

11:30 – 12:00 EAHAD European Activities Update M Makris
12:00 – 12:30 Arosenius Lecture 2020

Chairs:

R Klamroth

F Baghaei

Haemophilia care in Europe B O’Mahony
12:30 – 13:15 Lunch Break
13:15 – 14:00 Poster and Research Awards Chairs:

F Peyvandi
K Fijn van Draat

13:15 – 13:35 Reports from 2018 Research Grant winners:
  • Interactions between fibrinogen variants and blood cells: toward a predictive model in congenital fibrinogen disorders
  • R Marchi
  • High throughput generation and characterisation of monoclonal anti-FVIII IgG from patients with haemophilia A
  • S Lacroix-Desmazes
13:35 – 14:00 Award presentations
14:00 – 15:00 SESSION 8: Hot Topics Chairs:

F Peyvandi
K Fijn van
Draat

FIRST-IN-HUMAN GENE THERAPY STUDY OF AAVhu37 CAPSID VECTOR
TECHNOLOGY IN SEVERE HAEMOPHILIA A: SAFETY AND FVIII ACTIVITY
RESULTS
S W Pipe
PHASE 1/2 INTERIM DATA FROM B-AMAZE STUDY OF ADENO ASSOCIATED
VIRUS (AAV) GENE THERAPY (FLT180A) CONFIRMS PROGRESS TOWARDS
ACHIEVING FACTOR IX LEVELS IN THE NORMAL RANGE FOR PATIENTS
WITH SEVERE OR MODERATELY SEVERE HAEMOPHILIA B
P Chowdary
ANTI-TFPI ANTIBODY BAY 1093884: EARLY TERMINATION OF PHASE II
DOSE ESCALATION STUDY DUE TO THROMBOSIS
M E Mancuso
SUMMARY OF THROMBOEMBOLIC (TE) OR THROMBOTIC
MICROANGIOPATHY (TMA) EVENTS IN PERSONS TAKING EMICIZUMAB
R Ko
15:00 – 15:15 Closing Remarks K Fijn van Draat