Final Programme
Allied Health Professionals Day
12:00 – 13:00 | AHP Day Registration and Lunch | |
13:00 – 15:00 | Joint Session: non-factor therapies | |
13:00-13:10 | Welcome and introduction | Wolfgang Miesbach |
13:10-13:15 | Aims and objectives of the session, format overview | Nanda Uitslager Paul Mclaughlin Lotte Haverman |
13:15-13:30 | Setting the scene:
| Nanda Uitslager Paul Mclaughlin Lotte Haverman |
13:30-14:45 | Case studies and group discussions | Maj Friberg Birkedal Paul Mclaughlin Christina Burgess |
14:45-15:00 | Session wrap-up and final thoughts | |
15:00 – 15:30 | Break |
15:30 – 16:30 | Nurses Session 1Different aspects of emicizumab | Mary Kavanagh |
15.30-15.50 | Experiences with Emicizumab so far | Carmen Escuriola-Ettinghausen |
15.50-16.20 | Nursing challenges and strategies with Emicizumab – outcome of survey | Maj Friberg Birkedal |
16.20-16.30 | Q&A | |
16.30-16.45 | Break | |
16.45-17.30 | Nurses Session 2SLAM | Linda Myrin Westesson Nanda Uitslager |
16:45 | NU01 – Training of nursing staff from non-haematology units in the reconstitution and administration of coagulation factors for haemophilia treatment | Laura Moralejo Cubero |
16:51 | NU02 – Unicentric analysis of the electronic record of health data reported by patients in clinical trials in coagulopathies | Sara García-Barcenilla |
16:57 | NU03 – Adult transition program led by clinical nurse specialist: The case of congenital coagulopathies | Cristina Benedicto |
17:03 | NU04 – OASIS Phase 1: Current state of nursing practices for patient management in the haemophilia treatment centers (HTC) in France | Stephanie Delienne |
17:09 | NU05 – Effect of nordic walking on risk factors for cardiovascular disease in people with haemophilia | Josipa Belev |
17.15-17.30 | Q&A and voting by expert panel of 9 pre-selected nurses | |
17.30-17.45 | Break | |
17.45-18.45 | NURSES SESSION 3Complications in care and what might help | Greta Mulders |
17.45-18.05 | How to recognise “low” literacy | Saskia Acda |
18.05-18.25 | How to use an interpreter | Robert Andersson |
18.25-18.35 | Q&A | |
18.35-18.45 | Best SLAM presentation and Star European Nurse award | Maj Friberg Birkedal |
18.45-18.50 | Wrap up and closing remarks | Nanda Uitslager |
19:00 – 21:00 | Networking reception *With short speeches by the EAHAD AHP Committees recapping the day |
12:00 – 13:00 | AHP Day Registration and Lunch | |
13:00 – 15:00 | Joint Session: non-factor therapies | |
13:00-13:10 | Welcome and introduction | Wolfgang Miesbach |
13:10-13:15 | Aims and objectives of the session, format overview | Nanda Uitslager Paul Mclaughlin Lotte Haverman |
13:15-13:30 | Setting the scene:
| Nanda Uitslager Paul Mclaughlin Lotte Haverman |
13:30-14:45 | Case studies and group discussions | Maj Friberg Birkedal Paul Mclaughlin Christina Burgess |
14:45-15:00 | Session wrap-up and final thoughts | |
15:00 – 15:30 | Break |
15:30 – 16:30 | SESSION 1Perspectives on how bleeding has changed after new therapies: now vs then | David Stephensen | |
15 :30 – 15 :45 | Difficulties in recognising whether patients bleed or not | Merel Timmer | |
15 :45 – 16 :00 | Challenges in paediatric physiotherapy: how newer therapies’ roll out affects approach and advice | Magnus Aspdahl | |
16 :00 – 16 :15 | Lived experience of using non-factor based therapy – interview with a PWH in the UK | Paul Mclaughlin | |
15 min Q A | |||
16:30 – 16.45 | Short Break | ||
16:45 – 17:25 | SESSION 2SLAM | Paula Loughnane Marie Katzerová | |
16:45 | PT01 – Using evidence-based co-design to develop a virtual based exercise intervention that aims to increase confidence to exercise in persons with haemophilia | Stephanie Taylor | |
16:55 | PT02 – Treatment using the Blazepod® to improve balance and reaction time in haemophilia patients: A pilot study | Rachel Tiktinsky | |
17:05 | PT03 – The DASH Project – Developing AHP services for people with haemophilia | Fionnuala Sayers | |
17:15 | PT05 – Utilization and treatment content of primary care physiotherapy for persons with bleeding disorders in the Netherlands: Preliminary results | Johan Blokzijl | |
17:25 | PT06 – A systematic review of measurement properties of physical function outcome measures applied in people with haemophilia | Andrea Bärlocher | |
17:25 – 18:20 | Short Break | ||
18:20 – 18:55 | SESSION 3Return to sport lecture | Merel Timmer | |
18:20 – 18:45 | Return to sport: Post joint bleeding, injury, muscle haematoma | Thomas Hilberg | |
18:45 – 18:55 | Q&A | ||
18:55 – 19:00 | Wrap up | Paul Mclaughlin | |
19:00 – 21:00 | Networking reception *With short speeches by the EAHAD AHP Committees recapping the day |
08:30 – 09:00 | Arrival and Registration/tea and coffee | |
09:00 – 13:00 | EUROPEAN PSYCHOSOCIAL ROUNDTABLE (PART 1)THE CREATION OF EUROPEAN PRINCIPLES OF PSYCHOLOGY IN NOVEL THERAPIES | |
09:00 – 09:30 | Welcome – outline of the day and objectives | Lotte Haverman Christina Burgess |
09:30 – 10:00 | Introduction to gene therapy and video | Wolfgang Miesbach Luke Pembroke |
10:00 – 10:30 | Explanation of the model | Lotte Haverman Christina Burgess |
10:30 – 11:00 | Coffee Break | |
11:00 – 12:00 | Pre and during the gene therapy journey | Lotte Haverman Christina Burgess |
12:00 – 13:00 | AHP Day Registration and Lunch | |
13:00 – 15:00 | Joint Session: non-factor therapies | |
13:00-13:10 | Welcome and introduction | Wolfgang Miesbach |
13:10-13:15 | Aims and objectives of the session, format overview | Nanda Uitslager Paul Mclaughlin Lotte Haverman |
13:15-13:30 | Setting the scene:
| Nanda Uitslager Paul Mclaughlin Lotte Haverman |
13:30-14:45 | Case studies and group discussions | Maj Friberg Birkedal Paul Mclaughlin Christina Burgess |
14:45-15:00 | Session wrap-up and final thoughts | |
15:00 – 15:30 | Break |
15:30 – 19:00 | EUROPEAN PSYCHOSOCIAL ROUNDTABLE (PART 2)THE CREATION OF EUROPEAN PRINCIPLES OF PSYCHOLOGY IN NOVEL THERAPIES | |
15:30 – 16:30 | Eligibility: Post and failure of the gene therapy journey | Gráinne O’ Brien |
16:30 – 17:15 | Interactive session on the model | Lotte Haverman |
17:15 – 17:30 | Break | |
17:30 – 18:30 | Other cohorts | David Stephensen Simon Fletcher |
18:30 – 19:00 | Wrap up | Lotte Haverman Christina Burgess |
19:00 – 21:00 | Networking reception *With short speeches by the EAHAD AHP Committees recapping the day |
09.00 – 10.45 | Multidisciplinary Educational Session | Jan Blatny |
09.00-09.10 | Allied Health Professionals Day Recap | Nanda Uitslager Paul Mclaughlin Lotte Haverman |
09.10-09.20 | Setting the scene: Difference between choosing for yourself and recommending | Ilaria Cutica |
09.20-10.30 | Panel Discussion: Treatment choices – multidisciplinary support for decision making | Jan Blatny Niamh O’Connell Mary Kavanagh Marie Katzerova Ilaria Cutica David Flanagan |
10.30-10.45 | Recap and closing thoughts | |
10.45 – 11.45 | Coffee break/Poster viewing | |
11.45 – 18.45 | Satellite Symposia | |
11.45 – 13.00 | Satellite Symposium 1 | |
Satellite Symposium 2 | ||
Satellite Symposium 3 | ||
13.00 – 14.00 | Lunch Break | |
14.00 – 15.15 | Satellite Symposium 4 | |
Satellite Symposium 5 | ||
Satellite Symposium 6 | ||
15.15 – 15.45 | Coffee Break | |
15.45 – 17.00 | Satellite Symposium 7 | |
Satellite Symposium 8 | ||
Satellite Symposium 9 | ||
17.00 – 17.30 | Coffee Break | |
17.30 – 18.45 | Satellite Symposium 10 | |
Satellite Symposium 11 | ||
Satellite Symposium 12 | ||
18:45 – 19:45 | Welcome Reception and Poster Presentations |
08.45 – 09.00 | Welcome and Introduction | Wolfgang Miesbach |
09.00 – 10.30 | Session 1Impact of Artificial Intelligence | Flora Peyvandi |
09.00 – 09.30 | AI in scientific communication | Mike Makris |
09.30 – 10.00 | AI in clinical research and potential impact on patient care | Amin Turki |
10.00 – 10.30 | Keynote: Machine Learning and AI | Gastone Castellani |
10.30 – 11.00 | Coffee Break/Poster Viewing | |
11.00 – 12.00 | Session 2Future non-factor therapies | Maria Teresa Alvarez Roman Hermann Eichler |
11.00 – 11.30 | Non-factor therapies for haemophilia and VWD | Steve Pipe |
11.30 – 12.00 | Paradigm change in acquired haemophilia? | Andreas Tiede |
12.00 – 13.00 | Lunch break/Poster viewing | |
EAHAD Annual General Meeting Only for EAHAD members | ||
13.00 – 14.30 | Session 3Optimised outcome of haemophilia treatment | Ana Boban Barbara Zieger |
13.00 – 13.30 | Towards a haemophilia-free mind | Cedric Hermans |
13.30 – 14.00 | Long-term joint health | Roberta Gualtierotti |
14.00 – 14.30 | Second generation haemophilia gene therapy: Potential benefits | Denise Sabatino |
14.30 – 15.00 | Coffee break/Poster viewing | |
15.00- 16.30 | Session 4Pros and cons debates | Niamh O’Connell Christoph Königs |
15.00 – 15.30 | Debate 1: Anticoagulation in haemophilia | Riitta Lassila (in favour) |
Jerzy Windyga (against) | ||
15.30 – 15.45 | Live voting, panel discussion and audience Q&A | |
15.45 – 16.15 | Debate 2: ITI vs non-replacement treatment | Mary Mathias (pro ITI) |
Corien Eckhardt (pro non-replacement treatment) | ||
16.15 – 16.30 | Live voting, panel discussion and audience Q&A | |
16.30 – 16.45 | Coffee break/Poster viewing | |
16.45 – 17.45 | Session 5EAHAD Research Grant Reports and Awards | Robert Klamroth Wolfgang Miesbach |
16.45 – 17.15 | Reports from the Research Grant winners | |
16.45 – 16.55 | Getting GRIP on Tolerance: The role of Fc Gamma receptors in immune tolerance to protein therapeutics | Ilja Oomen |
16.55 – 17.05 | Identifying performance-based outcome measures of physical function in people with haemophilia (IPOP) | David Stephensen |
17.05 – 17.15 | Exploring posttraumatic stress symptoms and pain memories in people with haemophilia and the influence on current pain experience | Anna Wells |
17.15 – 17.35 | EAHAD Lifetime Achievement Awards 2024 and presentations | |
17.15 – 17.25 | Development of rFVIIa, a haemostatic agent | Ulla Hedner |
17.25 – 17.35 | Reflections on a lifetime of haemophilia nursing | Kate Khair |
17.35 – 17.45 | Poster awards and 2023 research grants awards | |
19.30 – 23:00 | Networking Evening |
08.30 – 10.00 | Session 6SLAM | Samantha Gouw Katharina Holstein |
08:30 | OR01 – Results of the first-in-human investigation of HMB-001 for prophylactic management of Glanzmann thrombasthenia | Suthesh Sivapalaratnam |
08:39 | OR02 – Safety and efficacy of valoctocogene roxaparvovec with prophylactic corticosteroids: 1-year GENEr8-3 results | Margareth Ozelo |
08:48 | OR03 – First report of a long-term follow-up extension study 6 years after gene therapy with AMT-060 in adults with haemophilia B confirms safety and stable FIX expression and sustained reductions in factor IX use | Wolfgang Miesbach |
08:57 | OR04 – Regular prophylaxis with a plasma-derived von Willebrand factor/Factor VIII concentrate is effective for reducing nosebleeds in children and adults with von Willebrand disease | Ana Boban |
09:06 | OR05 – Stable expression of factor VIII over 5 years following adeno-associated viral vector-mediated gene transfer in participants with severe haemophilia A using a novel human factor VIII variant | Pratima Chowdary |
09:15 | OR06 – Human liver biopsy analysis reveals lower RNA transcription may contribute to a decline in FVIII levels following AAV5-hFVIII-SQ gene therapy | Ashrafali Mohamed Ismail |
09:24 | OR07 – Efficacy and safety of concizumab prophylaxis in haemophilia A or B with and without inhibitors: 56-week cut-off results of the phase 3 explorer7 and explorer8 studies | Jerzy Windyga |
09:33 | OR08 – Emicizumab prophylaxis for the treatment of infants with severe haemophilia A without factor VIII inhibitors: Primary analysis of the HAVEN 7 study | Karin Fijnvandraat |
09:42 | OR09 – Etranacogene dezaparvovec shows sustained efficacy and safety in adult patients with severe or moderately severe haemophilia B 3 years after administration in the HOPE-B trial | Steven Pipe |
09:51 | OR10 – Safety and efficacy of valoctocogene roxaparvovec in participants with active and prior FVIII inhibitors: Preliminary results from GENEr8-INH, a phase 1/2 study | Guy Young |
10.00 – 10.30 | Coffee break/Poster viewing | |
10.30 – 11:30 | Session 7EAHAD Activities | Jan Blatny |
10.30 – 10.42 | Women and bleeding disorders working group update | Karin Van Galen |
10.42 – 10.54 | Haemophilia gene therapy trials database | Wolfgang Miesbach |
10.54 – 11.06 | EUHASS | Mike Makris |
11.06 – 11.18 | Haemophilia centres accreditation and audit pilot project | Ana Boban Fariba Baghaei |
11.18 – 11.30 | EAHAD e-Learning modules | Yesim Dargaud |
11.30 – 12:00 | AROSENIUS LECTURE 2024 | Fariba Baghaei |
Insights into non-severe haemophilia | Karin Fijnvandraat | |
12:00 – 12:45 | Lunch Break | |
12.45 – 13.30 | Session 8Panel discussion: Could improvements become real? | Pratima Chowdary Johannes Oldenburg |
Panel discussion on challenge of access, reimbursement, feasibility of new treatments: practicability, functionality, sustainability | Flora Peyvandi Olivia Romero-Lux Martina Schüssler-Lenz Stefan Dhein | |
13.30 – 13.45 | Break | |
13.45 – 15.00 | Session 9Latest Clinical Trial Results | Robert Klamroth Wolfgang Miesbach |
13:45 | OR11 – SerpinPC in persons with severe haemophilia (PwH): updated results from a multicentre multi-part, first-in-human study | Trevor Baglin |
14:00 | OR12 – Effective protection with once-weekly efanesoctocog alfa in children: Secondary analyses of pharmacokinetics and bleeds from the XTEND-Kids trial | Kathelijn Fischer |
14:15 | OR13 – Safety and efficacy of the fitusiran revised antithrombin-based dose regimen (AT-DR) in people with haemophilia (PwH) A or B, with or without Inhibitors (ATLAS-OLE) | Guy Young |
14:30 | OR14 – Safety, tolerability, pharmacokinetics, and pharmacodynamics of Mim8 in patients with haemophilia A: FRONTIER1 extension | Pratima Chowdary |
14:45 | OR15 – Efficacy and safety of fidanacogene elaparvovec in adults with moderately severe or severe haemophilia B: Updated results from the phase 3 BENEGENE-2 gene therapy trial | Robert Klamroth |
15.00 – 15.15 | Closing remarks and save the date for EAHAD 2025 | Wolfgang Miesbach Flora Peyvandi |