In 2019, the EHC renewed the mandate of its Women and Bleeding Disorders Committee for a second term. A call for volunteers was launched and eight volunteers from across Europe were selected to advise and continue to spearhead EHC activities for women with rare bleeding disorders.
Earlier in March, this committee met in Copenhagen to develop its strategic plan for the next three years. To continue its mission of raising awareness on issues faced by women affeced by rare bleeding disorders and creating a sense of community, the committee will bring you regular updates on their activities but also of national initiatives on women and bleeding disorders in EHC Now! newsletter. At a later stage, the committee will develop its own newsletter on both its and national activities as well as any relevant development on women and bleeding disorders.
We hope you will enojoy this new reading. To stay up-to-date with EHC news and events, please sign-up for EHC updates.
Dear EHC community,
We are happy to give you this first update on our activities. In the coming months, we are hoping to give you regular updates through a newsletter specific on women and bleeding disorders to provide readers with information and different aspects of topics relating to women and bleeding disorders (WBD) as well as share information about the work in the EHC WBD committee.
The aim of the Women and Bleeding Disorders (WBD) Committee of the European Haemophilia Consortium (EHC) is to gather people with a keen interest in promoting and raising awareness about issues related to women and bleeding disorders. Hence the role of the EHC WBD Committee is to create awareness, recognition, support and education about, and for, women in the bleeding disorder community at the European level.
The committee for 2020-2022 is composed of the volunteers:
- Yannick Collé, French NMO
- Evelyn Grimberg, Dutch NMO
- Diana Lieghezan, Romanian NMO
- Tatjana Markovic, Serbian NMO
- Ana Pastor, Portuguese NMO
- Katja Peltoniemi, Finnish NMO
- Naja Skouw-Rasmussen – Chair, EHC Steering Committee member, Denmark
- Anna Tollwé, Swedish NMO
Please do not hesitate to reach out to us if you have any questions or information you would like to share. You can reach the committee members by contacting Laura Savini at the EHC office.
As many of you might already have heard or at least expected, it was with a heavy heart but with our participants and the greater community’s interests at the forefront that it was decided to postpone our Women and Bleeding Disorders Conference 2020 to take place in 2021 instead. However, we are pleased to announce that we will not be waiting until 2021 to interact and become more educated about women and bleeding disorders. Therefore, we have begun preparing for some online webinars to take place during spring. We will share further information with you as soon as possible. We hope that you will take part in.
Beside webinars, we aim to have more regular touchpoints, and this is why we would like to keep you regularly informed of our activities. Please share it with others that you think might have an interest in women and bleeding disorders and sign up for EHC updates.
We are also thrilled to announce that from now on, you will also receive our updates through social media. Check EHC Facebook page on Mondays to receive information about women and bleeding disorders. So, if you know some good stories, facts, news etc. that the greater bleeding disorder community could be interested in, please share them with us. Finally, we would like to remind you to check out the EHC website and YouTube Channel at which you can find more about the work of the EHC WBD committee over the past years.
With this first update, we hope to be more in contact with you all.
Stay healthy and safe until next time,
Best wishes
EHC Women and bleeding disorder committee
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.
