The European Haemophilia Consortium (EHC) will hold its 2024 Workshop on New Technologies in Rare Bleeding Disorders on 1-3 November 2024 in Helsinki, Finland.
This event brings together EHC members and healthcare professionals working closely with the EHC to provide them with an update on medical advancements in rare bleeding disorders.
With novel products planned to be distributed on the European market in the future, this conference will look in more detail at the technology behind these new products as well as strategies to ensure patient access, notably to ensure that these products are economically viable.
Therefore, the key objectives of this workshop are to:
- Provide participants with a more technical understanding of the different new technologies coming to the market;
- Equip representatives of patient organisations and others with the appropriate advocacy tools to gain improved access to these new technologies.
Here below you will find further information on this event.
| What | Workshop on New Technologies in Rare Bleeding Disorders |
| When | 1-3 November 2024 |
| Where | Helsinki, Finland |
| For whom | EHC NMOs and healthcare professionals working with NMOs |
| Language | English |
| Programme | Download the programme here. |
| Registrations | This Workshop is exclusively open to EHC Members.
Places are limited to two per NMO, and registrations will be done on a first-come, first-served basis until we reach Workshop’s capacity. Registration is closed. |
| EHC Staff contact person | Olivia Romero Lux, EHC CEO |
| Practical details | EHC will cover registration, travel (in economy fare), and accommodation (at the Workshop’s hotel) costs to this workshop for participants nominated by EHC NMOs. |
| Registration procedures | NMOs nominate their participants and register them via the registration form provided to them by direct email.
The EHC cordially invites NMOs to nominate one doctor and one patient representative to participate in this conference. In order to ensure the success of this workshop, please ensure to nominate a patient representative who is (or will be) actively involved in the selection of treatment products for your country. Participants register and book accommodation. Once registered, participants will receive further instructions regarding travel allowances and other details. |
| Event venue | The Workshop is taking place at the GLO Hotel Art in Helsinki, Finland. |
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
