Dear Readers,
As another year ends, we thank those who have yet again stepped in to support our work!
From our hard-working volunteers to our members, all those who have joined us for our events, our partners and suppliers who contribute to our activities, and our sponsors who help us make our work a reality, a big heartfelt thank you to you all! We sincerely appreciate your support and wish you a wonderful holiday season, and we look forward to working with you again in 2023. To this end, we want to remind you that there is still time to apply to volunteer on one of the three EHC committees. In addition, our von Willebrand Disease Working Group is looking for ambassadors!
In this newsletter, we share a short video with our end-of-year wishes. You will also read a message from our President and CEO, who look back at the year past and give us their insight into 2023. In the last newsletter, we announced some changes within the Steering Committee. In this edition, we also wish to inform you of some operational changes that will occur in the new year.
Despite 2022 drawing to a close, we don’t stop there – we also want to inform you of numerous activities and events in 2023! We start with our 2023 edition of the EHC Youth Leadership Workshop. Nominations for your candidates open today, so read below on how you can apply to one of our most popular events. The European Rare and Inhibitor Network will resume its peer-to-peer sessions. Read below for more details. Finally, we will host four interactive and online workshops on the pathway towards healthy ageing.
We are also delighted to inform you that the virtual exhibition ‘Open the door to a new reality’ presented at the 2022 Leadership Conference and Conference will soon start travelling to you! Read below for more details on how to host this exhibition in your country.
We hope you enjoy this newsletter and wish you again a peaceful holiday time. Please do not hesitate to contact the EHC office for further information.
Warm wishes,
The EHC team
EHC News
- EHC wishes you a peaceful holiday season,
- Holidays wishes from CEO and President,
- Goodbye officers, hello Leads! Discover what organisational changes are coming to the EHC in 2023,
- Volunteer with the EHC! We are looking to join EHC activities for the 2023-2025 mandates,
- Open the door to a new reality! The EHC exhibition is coming to you.
EHC 2023 calendar of events
- 25-27 January 2023 – EHC Youth Alumni Event – Amsterdam, the Netherlands (registration upon invitation only),
- 21-23 April 2023 – EHC Youth Leadership Workshop – Brussels, Belgium
- 15-18 June 2023 – EHC Leadership Conference, including an ***extraordinary general assembly*** – Brussels, Belgium,
- 6-8 October 2023 – EHC Conference – Zagreb, Croatia.
- 3-5 November 2023 – EHC Workshop on New Technologies in Rare Bleeding Disorders, Location to be determined
News from our committees
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.
