AHP Day
6 February 2024 - Frankfurt, Germany
Nurses
Physiotherapists
Psychosocial
Nurses
| 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 | |
Physiotherapists
| 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 | ||
Psychosocial
| 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 | |
