Dear Readers,
Another month has passed, and we are delighted to present you with the November issue of our newsletter.
EHC volunteers and staff are currently in Barretstown, Ireland, where the first Summit for the European Rare and Inhibitor Network (ERIN) is taking place! Over 80 participants from across Europe affected by an inhibitor or a ‘rarer’ bleeding disorder (such as single-factor deficiencies – besides FVIII and FIX, and platelet disorders) are gathering for a weekend of scientific lectures, capacity building and networking activities, and we hope, some genuine fun! You can check our social media channels throughout the weekend for more updates.
In November, close to 70 people gathered in Marseille, France, for our Workshop on New Technologies in Haemophilia and Other Rare Bleeding Disorders. Participants could attend two days of exciting talks on novel replacement, non-replacement and gene therapies, as well as issues arising for the organisation of care and financing of these therapies.
Following our General Assembly, held during the EHC 2022 Conference in Copenhagen resulting in the election of a new Vice-President Finance, Ms Manon Degenaar-Dujardin, we have had some changes within our Steering Committee. Here below, we give you more information on newly co-opted members.
We would also like to remind you that we are looking for volunteers to join three of our committees for a three-year term. Read below to see how you can apply to join the EHC ERIN Committee, the Women and Bleeding Disorders Committee, and the newly formed Non-Severe Committee.
We are delighted to present you with our 2021 Annual Report. We also wish to inform you that the EHC 2022 Conference on Women and Bleeding Disorders proceedings have been published in the Journal of Haemophilia Practice!
Finally, we were shocked and saddened to learn about the passing of Mr Herman De Smet, President of the Belgian National Member Organisation. Please join us in sending our deepest condolences to his close ones and the Belgian rare bleeding disorders community.
We hope you enjoy this newsletter, and please do not hesitate to contact the EHC office for further information.
Warm wishes,
The EHC team
We are looking for volunteers to join EHC activities for the 2023-2025 mandates
As 2022 is coming to an end, so are the mandates of some of our committees. The EHC is looking for volunteers to join its:
- European Rare and Inhibitor Network (ERIN),
- Women and Bleeding Disorders Committee, and
- Its newly established Non-Severe Bleeding Disorders Committee.
Are you an established member of your national haemophilia and rare bleeding disorders community and are looking to diversify your volunteering activities?
Do you want to support the rare bleeding disorders community and become an advocate for patients across Europe?
Do you wish to bring your strategic views to develop solutions for issues affecting different parts of the community?
Then get in touch with your National Member Organisation (NMO) to be put forward as a volunteer to join one of the following EHC Committees.
EHC NMOs can nominate their candidates until 3 January 2023. For more information on the Terms of Reference of each Committee and how to apply, head to the EHC website.
Following the last EHC General Assembly, held in October 2022, several changes occurred within the EHC Steering Committee. EHC Vice-President Finance, Ms Minette Van der Ven’s term ended, and the EHC General Assembly elected Ms Manon Degenaar-Dujardin. Ms Degenaar-Dujardin (Dutch National Member Organisation, NMO) was already a co-opted member of the EHC Steering Committee and the Chair of the EHC von Willebrand Working Group. Ms Degenaar-Dujardin brings to the EHC a wealth of experience from her volunteering work and professional activities, and the EHC is delighted to welcome her in this new role. We also thank Ms Van der Ven for her service to the EHC and for helping the organisation to update its financial management systems.
As the layperson position of Ms Degenaar-Dujardin became vacant, the EHC Steering Committee decided to co-opt Ms Evelyn Grimberg (Dutch NMO) to the Steering Committee for the remainder of Ms Degenaar-Dujardin’s term. Ms Grimberg is also the Chair of the EHC Women and Bleeding Disorders Committee, whose term is ending in December. She is a passionate advocate for women’s issues and access to treatment and care for rarer bleeding disorders. Please join us in welcoming Ms Grimberg to her new role.
Finally, we are saddened to announce that Mr Thomas Sannié (French NMO) is stepping down from his lay position on the EHC Steering Committee due to increased professional commitments. Mr Sannié has been a strong advocate for the involvement of patients in the shared-decision making process and the needs of people with non-severe bleeding disorders. The EHC wishes to warmly thank Mr Sannié for his commitment and dedication to the EHC.
Following Mr Sannié’s departure, the EHC Steering Committee has decided to co-opt Ms Olivia Romero-Lux (French NMO). Ms Romero-Lux is a former Steering Committee member and member of the EHC Youth Committee. She has extensive volunteering experience at national, European and international levels. Please join us in welcoming Ms Romero-Lux back to the EHC.
We are also excited to let you know that there will be some changes in the organisation of the EHC secretariat. Check out our December newsletter for more details.
Following the approval of its activities and accounts by the EHC General Assembly, the EHC has released its 2021 Annual Report.
Read it now on the EHC website.
The proceedings of the 2022 EHC Conference on Women and Bleeding Disorders are now available as open access in the Journal of Haemophilia Practice.
Click on the links below to read the articles:
- Conference introduction,
- Monitoring to improve quality of life for women with bleeding disorders,
- Ageing and women with bleeding disorders,
- Focus on musculoskeletal health in women and bleeding disorders,
- The Cinderella Study, women’s lived-in experience with bleeding disorders – a CSL Behring Symposium,
- Advocacy worldwide for women with bleeding disorders.
As we are edging towards the end of the year, we are delighted to announce some of our 2023 event dates. We will inform you as soon as further information becomes available:
- 25-27 January 2023 – EHC Youth Alumni Event – Amsterdam, the Netherlands,
- 15-18 June 2023 – EHC Leadership Conference – Brussels, Belgium, and
- 6-8 October 2023 – EHC Conference – Zagreb, Croatia.
Save the Date: EHC Youth Alumni Event, 25-27 January 2023
We are delighted to announce our second Youth Alumni Event on the 25th – 27th of January 2023 in the Volks Hotel, Amsterdam, The Netherlands.
Since the beginning of the Youth Leadership Workshop in 2014 – it has always been important to the EHC to invest in our interaction, engagement and training with the future leaders in our community. We have reached out to our Youth Leadership Workshop alumni, who have an overwhelming desire for re-engagement. The EHC wishes to explore further training, engagement and reconnecting with the EHC and their peers from other NMOs throughout Europe.
For more information or questions, please do not hesitate to contact Fiona. The opening date for registrations will be shared with our NMOs soon, but in the meantime, you can see a preliminary programme here.
We can wait to see you soon!
In Memoriam Herman De Smet
We wish to send our deepest condolences to his family, loved ones, and the Belgian bleeding disorders community for this loss. During his funeral service, attended by Jo Eerens, an EHC Steering Committee member, Herman was remembered for his sense of service and respect towards others, for the tireless work he carried out for the association and at the service of every one of its members.
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.
