4 February 2025 - Milan, Italy
4 February 2025 - Milan, Italy
| 12:00 – 13:00 | REGISTRATION AND LUNCH |
| 13:00 – 15:00 | JOINT SESSION BLEEDING DISORDERS THROUGH LIFE | Paul McLaughlin |
| 13:00-13:10 | Opening message | Flora Peyvandi |
| 13:10-13:15 | Introduction | Paul Mclaughlin |
| 13:15-13:45 | Case study: a young patient with severe FIX deficiency and comorbidities | Mary Kavanagh |
| 13:45-14:15 | Case study presentation on menopause | Christina Burgess |
| 14:15-14:45 | Case study presentation on care home | Anne Juanos |
| 14:45-15:00 | Discussion and wrap-up | |
| 15:00 – 15:30 | Break | |
| 15:30 – 16:10 | NURSES SESSION 1 SLAM | Renester Fenton & Greta Mulders |
| 15.30-15.35 | Welcome | Nanda Uitslager (NL) |
| 15.35-15.41 | Differences in Practice in the Use of Desmopressin in Adults with Bleeding Disorders Throughout the Republic of Ireland and the United Kingdom | Roisin Ward (IE) |
| 15.41-15.47 | Nurse-led education for female haemophilia carriers throughout their lives | Nuria Caballero (ES) |
| 15.47-15.53 | Interim results from the lived experience of von Willebrand disease (VWD 360) study | Kate Khair (GB) |
| 15.53-15.59 | The intergenerational impact of the contaminated blood scandal | Sally-Anne Wherry (GB) |
| 16.00-16.10 | Q&A |
| 16.10 – 17.00 | NURSES SESSION 2 MASTERCLASS: GENETICS | Malin Axelsson |
| 16.10-16.30 | Explaining genetics C counselling | Nadine Andersson Gretenkort |
| 16.30-16.50 | Making a family tree | |
| 16.50-17.00 | Report back | |
| 17.00-17.35 | Break | |
| 17.30 – 18.45 | NURSES SESSION 3 HOW DO YOU MANAGE RARE BLEEDING DISORDERS | Linda Myrin Westesson |
| 17:30-17:40 | Case study on Afibrinogenemia | Nina Jurander |
| 17:40-17:50 | Case study on Severe Factor X Deficiency | Synne Hole Ane Halbrendt |
| 17:50-18:00 | Case study on Severe Factor V Deficiency | Niamh Larkin |
| 18:00-18:20 | Glanzmann: the 360 study | Kate Khair |
| 18:20-18:45 | Q&A | |
| 18.45 – 18.50 | WRAP UP AND CLOSING REMARKS | Nanda Uitslager |
| 18.50 – 19.00 | BEST SLAM PRESENTATION AND STAR EUROPEAN NURSE AWARD | Maj Friberg Birkedal |
| 19:00 – 21:00 | Networking reception *With short speeches by the EAHAD AHP Committees recapping the day | |
| 12:00 – 13:00 | REGISTRATION AND LUNCH |
| 13:00 – 15:00 | JOINT SESSION BLEEDING DISORDERS THROUGH LIFE | Paul McLaughlin |
| 13:00-13:10 | Opening message | Flora Peyvandi |
| 13:10-13:15 | Introduction | Paul Mclaughlin |
| 13:15-13:45 | Case study: a young patient with severe FIX deficiency and comorbidities | Mary Kavanagh |
| 13:45-14:15 | Case study presentation on menopause | Christina Burgess |
| 14:15-14:45 | Case study presentation on care home | Anne Juanos |
| 14:45-15:00 | Discussion and wrap-up | |
| 15:00 – 15:30 | Break | |
| 15:30 – 16:10 | PHYSIOTHERAPISTS SESSION 1 SLAM | Paula Loughnane & Magnus Aspdahl |
| 15.30-15.35 | Welcome | |
| 15.35-15.41 | Psychometric Evaluation of the Timed Up and Go (TUG) Test in Adults with Haemophilia | Fabian Tomschi (DE) |
| 15.41-15.47 | Thermographic change and muscle strength examination in children with haemophilia who had at least one time history of bleeding at lower extremity | Hande Guney Deniz (TR) |
| 15.47-15.53 | Understanding healthcare professionals experiences and perceived competencies for pain management in people with haemophilia – a qualitative study | Paul McLaughlin (GB) |
| 15.53-15.59 | Measurement properties of a core outcome set monitoring physical capability in people with haemophilia | David Stephensen (GB) |
| 16.00-16.10 | Q&A | |
| 16.10 – 17.00 | PHYSIOTHERAPISTS SESSION 2 DEBATE: AGEING IN HAEMOPHILIA: IS JOINT SCREENING FUTILE? | Paul McLaughlin Merel Timmer |
| 16.10-16.20 | Ageing in haemophilia: State of the art | William McKeown |
| 16.20-16.50 | Joint screening is futile | Sofia Pérez-Alenda (in favour)/ Victor Jimenez-Yuste (against) |
| 16.50-17.00 | Q&A | |
| 17.00-17.35 | Break | |
| 17.30 – 18.45 | PHYSIOTHERAPISTS SESSION 3 CONSIDERING COMORBIDITIES IN PEOPLE WITH BLEEDING DISORDERS | Marie Katzerova Nathalie Grinda | ||
| 17:30-17:48 | Cardiometabolic issues | Megan Kennedy | ||
| 17:48-18:06 | Bone health issues | Laurent Frenzel | ||
| 18:06-18:24 | Setting up a haemophilia-specific pain management service | Aine O’Gara | ||
| 18:24-18:42 | Orthopaedic surgery in people with haemophilia | Luigi Piero Solimeno | ||
| 18.42 – 19.00 | WRAP-UP AND CLOSING REMARKS | |||
| 19:00-21:00 | Networking reception *With short speeches by the EAHAD AHP Committees recapping the day | |||
The stream is dedicated to the memory of Ana Torres Ortuño, a beloved and dedicated member of the EAHAD Psychosocial Professionals Committee, who passed away in September 2024.
| 12:00 – 13:00 | REGISTRATION AND LUNCH |
| 13:00 – 15:00 | JOINT SESSION BLEEDING DISORDERS THROUGH LIFE | Paul McLaughlin |
| 13:00-13:10 | Opening message | Flora Peyvandi |
| 13:10-13:15 | Introduction | Paul Mclaughlin |
| 13:15-13:45 | Case study: a young patient with severe FIX deficiency and comorbidities | Mary Kavanagh |
| 13:45-14:15 | Case study presentation on menopause | Christina Burgess |
| 14:15-14:45 | Case study presentation on care home | Anne Juanos |
| 14:45-15:00 | Discussion and wrap-up | |
| 15:00 – 15:30 | Break | |
| 15:30 – 17:05 | PSYCHOSOCIAL PROFESSIONALS SESSION 1 WORKSHOP ON ETHICAL ISSUES | Christina Burgess Gaby Golan |
| 15:30-15:35 | Welcome | Christina Burgess |
| 15:35-15:50 | Introduction | Gaby Golan |
| 15:50-16:05 | Point of view of medical psychology | Alice van Dijk-Lokkart |
| 16:05-16:20 | Scenario 1: Novel Therapies and Gene Therapy | Ilaria Cutica Gaby Golan |
| 16:20-16:32 | Small group discussion | |
| 16:32-16:35 | Feedback | |
| 16:35-16:50 | Scenario 2: Confidentiality | Christina Burgess Gaby Golan |
| 16:50-17:02 | Small group discussion | |
| 17:02-17:05 | Feedback | |
| 17:05-17.10 | Take away message | Christina Burgess Gaby Golan |
| 17.10-17.30 | Break | |
| 17.30 – 18.45 | PSYCHOSOCIAL PROFESSIONALS SESSION 2 TRAUMATIC EXPERIENCES IN HAEMOPHILIA | Lotte Haverman Karolien Bartels |
| 17:30-17:35 | Introduction | Karolien Bartels |
| 17:35-17:55 | Psychosocial barriers in haemophilia | Grainne O’Brien and Gloria Rooney |
| 17:55-18:15 | Trauma and pain memories in IBD | Anna Wells |
| 18:15-18:45 | Case study – EMDR Treatment | Alice van Dijk-Lokkart and Petra Buckova |
| 18.45 – 19.00 | CLOSING REMARKS AND FUTURE DIRECTION | |
| 19:00 – 21:00 | Networking reception *With short speeches by the EAHAD AHP Committees recapping the day | |