In January 2023, a new three-year mandate of the EHC Women and Bleeding Disorder started. This Committee brings together volunteers from across Europe who actively raise awareness and address challenges women with bleeding disorders face. It is currently composed by Anna Tollwé (Chair, Sweden), Marion Bräuer (Austria), Yannick Collé (France), Karola Diosi (Hungary), Tatjana Markovic (Serbia) and Ana Pastor (Portugal). Their work is coordinated by EHC staff member Zita Gacser.
On 19-21 May, the EHC Women and Bleeding Disorders (WBD) Committee held its third Strategic Retreat in Brussels, Belgium. The meeting allowed members who started a new mandate in January 2023 to brainstorm and set goals and strategic priorities for the committee work over the next three years.
The group agreed to continue the work with the former committee’s goals, turning them into SMART goals (Specific, Measurable, Achievable, Relevant, and Time-Bound goals):
-
Goal 1 – Improve general knowledge of WBD in the bleeding disorders community;
-
Goal 2 – Improve access to treatment and diagnosis for WBD; and
-
Goal 3 – Highlight the link between infertility/fertility and bleeding disorders.
To achieve these goals, the strategy defined is based on the prioritisation of small actionable items, with relevance to creating a solid network that strengthens the bonds between every member, focusing on in-person meetings and events, and adapting the Communication Plan to reinforce the presence and visibility of the EHC WBD Committee within the Bleeding Disorders Community and in general.
During the retreat, the EHC WBD working groups reflected on their specific areas of work, identified constraints faced, and finally brainstormed on the best way to try to overcome them:
- The ”Ambassadors Working Group” proposed to create a strong network by integrating NMOs with different degrees of development in women’s committees through a “Mentoring Programme.”
- The “Fertility Working Group” intends to start sharing personal stories, connect with other patient-related groups, and reinforce collaboration with other patient organisations.
During the retreat, the Committee discussed its presence and plan for future events, such as the Leadership Conference, where the WBDC is responsible for a workshop; the EHC Annual Conference; and defining a draft program for the next EHC Women’s Conference, as well as reorganizing the Communications Plan for this new mandate.
It was a very productive weekend, with enthusiastic discussions and a strong flow of ideas, that resulted in a more focused approach to the different tasks and steps we have to follow to ensure the meeting of the defined goals for this mandate, which led to a well-structured plan for the work of the EHC WBD Committee for the next three years.
On the sidelines of this meeting, we asked Women and Bleeding Disorders members to share their motivation for joining the group and their goals and aspirations for the work they will carry forward in the next three years.
WBD Committee
Marion Bräuer: “Aiming for early diagnosis, adequate treatment and recognition for women’s issues change women’s lives for the better. This opportunity and the great sense of community made me apply again for this committee.”
Yannick Collé: “I applied again to be a member of the EHC WBD committee to carry on the work with the NMOs ambassador to achieve an active and helpful network and partnership.”
Karola Diósi: “I met amazing people committed to improving the quality of life of women with bleeding disorders. We have accomplished more projects together, and I am looking for opportunities to continue this tendency.”
Tatjana Markovic: “Why again? To be a part of a great team. A team dedicated to improving and raising awareness, treatment, and diagnosis in the WBD population. Only empowered women across Europe can fight for their rights, and it is a great pleasure and pride for me to be part of the WBD committee that represents this new awakening force.”
Ana Pastor: “Reapplying for the EHC WBDC was like returning home… to a home where I can help to empower and create awareness, recognition, support, and information for women in the BD community. I’m thrilled to participate in this project and very enthusiastic about the results of the upcoming work with this amazing group of women!”
Anna Tollwe: “During the last mandate, we started several important projects I want to continue working on. My motivation is to improve the lives of women with bleeding disorders so that future generations do not have to fight for diagnosis and adequate treatment through all stages of life.”
The WBD Committee is looking for volunteers! If you’d like to participate in the committee’s work, please consult the call for volunteers here.
Members from the new EHC Women and Bleeding Disorders Committee met in Brussels for their strategic retreat.
From left to right: Anna Tollwé, Ana Pastor, Yannick Collé, Tatjana Markovic and Zita Gacser. In the background, Marion Bräuer and Karola Diosi took part in the meeting remotely.
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.
