Programme

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 K Khair
L Myrin Westesson
14:20 – 14:55 SLAM session (5 min – 5 speakers – 5 posters)
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 – 18:50 Mindfulness for nurses and patients J Cleary
18:50 – 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: 5/10 Free Paper and 5/5 Case Study session Chair: S Lobet
15:30 – 16:20 Five 10-minute Free Paper presentations
16:20 – 16:30 Discussion with the audience
16:30 – 16:55 Five 5-minute Case Study presentations
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
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
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
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 – 22:00 Networking Reception Dinner
09:30 – 11:00 MULTIDISCIPLINARY EDUCATIONAL SESSION:
Managing Woman-Specific Bleeding Issues

Chairs:

K van Galen
R d’Oiron
M Degenaar
R Kadir

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
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 B Nolan
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

Chairs:

R Lassila
E Rettenbacher

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
20.00 – 00:00 Networking Evening
08:30 – 10:00 SESSION 6: SLAM

Chairs:

M Makris
K Fijn van Draat

10 abstracts selected for oral presentation
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
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

To be announced in January 2020
15:00 – 15:15 Closing Remarks K Fijn van Draat