Nurses Committee Newsletter
Spring 2025
EAHAD 2025 Congress
Allied Healthcare Professional Day Recap
During the Allied Healthcare Professional day, we started with a longer joint session, themed “Bleeding disorders throughout life“.
Three case studies were presented: a young patient with severe FIX deficiency and comorbidities, menopause and care home. With afterwards time for discussion during which each discipline could react to all cases and give insight from their own background.
The nurses stream started with the SLAM were 4 nurses presented research about:
- Differences in Practice in the Use of Desmopressin in Adults with Bleeding Disorders Throughout the Republic of Ireland and the United Kingdom by Roisin Ward (IE)
- Nurse-led education for female haemophilia carriers throughout their lives by Nuria Caballero (ES) => the winner!
- Interim results from the lived experience of von Willebrand disease (VWD 360) study by Kate Khair (UK)
- The intergenerational impact of the contaminated blood scandal by Sally-Anne Wherry (GB)
All were very informative, and the last one was also emotional.
During the masterclass about genetics, information about different ways of inheritance was presented. After that, the audience was invited to make family trees themselves. Who would you test and why? Very interesting and practical session.
The last session was about how to manage a rare bleeding disorder. Nurses from different countries presented a case. Those were very interesting, but afterwards participants told us that for next time it would be beneficial to give the speakers more time, so interaction was possible.
Star European Haemophilia Nurse Award
At EAHAD 2025 in Milan, we were proud to award not one but two nurses with the EAHAD Star European Haemophilia Nurse Award.
Read below to understand why we ask you to please keep on nominating your colleagues. Surely many more fantastic nurses go above and beyond for their patients who deserve to be recognised.
Our first winner was
Synne Hole, Norway
The reasons she was nominated and chosen.
Both children and adults hold Synne in high regard. She is passionate, skilled, and reliable.
As a colleague, she is inclusive, humorous, knowledgeable, and innovative! She goes to great lengths to ensure children have a positive experience when we meet them in the outpatient clinic and has a unique way of making all patients feel seen, heard, and understood.
Congratulations Synne!
Synne’s reaction to winning the prize:
“I was greatly surprised to win the prize. Being nominated and hearing the good words from my colleagues in Oslo, whom I value so much, was great. I am honoured to receive the prize in the impressive company of EAHAD nurses.
I love my work!”
Our second winner was
Marie Eales, UK
The reasons she was nominated and chosen.
With nearly a decade of experience, Marie has dedicated her knowledge, skills, and experience of bleeding disorders to the greater good, both locally, as well as nationally in her in her role as chair of the UK Haemophilia nurses association. Marie is a strong advocate for haemophilia nurses, their role within the wider MDT and professional development. Through her guidance and encouragement, staff under her care thrive and progress in their role.
Congratulations Marie!
Marie’s reaction to winning the prize:
“It was such a lovely and unexpected surprise! AHP Day at EAHAD in Milan was already a great day, even though I was feeling slightly under the weather. When my name was called, I was genuinely in disbelief—‘Me? Are you sure??’ It was such a special moment, and I’m incredibly grateful to those who nominated me.
I can honestly say I truly love my job as a Paediatric Haemostasis Nurse. Despite the inevitable ups and downs life brings, it’s the amazing patients and their families who make it all worthwhile. 😊
Receiving the Star Nurse Award meant so much to me. Nurses don’t always get the recognition for the hard work, emotion, and time we pour into our roles, so this acknowledgement touched me deeply. Thank you so much!“
SLAM and Poster winner
Nuria Caballero Mencia, Spain
This project is the result of a multidisciplinary effort involving professionals from the Integrated Haemophilia Unit at Sant Joan de Déu – Sant Pau hospitals, the Catalan Haemophilia Association, and a group of haemophilia carriers and other family members. Together, we developed five specific leaflets: one for caregivers, one for teenagers, one for adults, one addressing maternity concerns, and another for women of advanced age.
One of the pillars of advanced nursing — and a core part of our daily work — is health education. For this reason, after developing the support materials, the nursing team detected the need to create a specific care plan for these women and their caregivers. A plan that responds comprehensively to their real needs, from a close and human perspective, and is adapted to each stage of their life.
Nuria’s reaction to winning both prizes:
I am honoured to have been selected as the winner of both the SLAM and the poster. I would like to thank the EAHAD Nurses Committee for the recognition and for giving visibility to this work and encourage my colleagues to submit their projects in future editions. Creating the presentation and the poster was a personal challenge, as it was my first time doing so in English. Being able to share our project with other professionals and give visibility to the needs of these women has been incredibly rewarding. I truly hope it can serve and inspire other colleagues as well. It has been a project that required time and dedication, but I would undoubtedly embark on a similar initiative again. It has been a very rewarding and insightful experience.
Nurses Committee Webinar: “How to do a literature search in databases”
Watch the webinar “How to Do a Literature Search in Databases” led by Dr. Wichor Bramer, Biomedical Information Specialist at Erasmus MC. This practical session will walk you through effective techniques for conducting literature searches, whether you are working on a systematic review or looking to improve your day-to-day research skills.
Moderated by Greta Mulders, with special guests Cathy Harrison and Brian Ramsay, this webinar is presented in collaboration with the WFH and ISTH Nurses Committees.
Highlights from EAHAD Working Groups
Women and Girls+ with Bleeding Disorders Working Group
The Women and girls with Bleeding Disorder working group was formed in 2018, and Petra Elvinge, a nurse from Stockholm, Sweden, was involved from the start.
The aim is to gather, concentrate and disseminate knowledge among European healthcare providers on the diagnosis and treatment of women-specific bleeding symptoms in inherited bleeding disorders; define research priorities within the European medical society regarding women with inherited bleeding disorders; diminish misdiagnosis and undertreatment of women with bleeding disorders in Europe.
Over the years, the WG accomplished a lot, as you can read on their page: EAHAD Women and Girls+ with Bleeding Disorders Working Group – EAHAD
Gene Therapy Working Group
The Gene Therapy Working Group was formed in 2019, and at the moment, two nurses, Greta Mulders and Marica Moro, are part of this working group. It strives to be at the forefront of providing critical information to physicians and patients about gene therapy in terms of practicability and safety. More information is available here: Gene Therapy Working Group – EAHAD
You all know Greta Mulders, who hosted webinars for the WG. Marica Moro from Italy new nurse member wrote a short personal message.
Dear colleagues,
It is a great honor for me to be part of the EAHAD Gene Therapy Working Group as a nursing representative.
Our primary objective is to promote a gene therapy approach that is increasingly safe, effective, and patient-centred. From a nursing perspective, I firmly believe that continuous professional development for all team members, combined with close attention to patient feedback, is essential to achieving this goal and delivering truly responsive care. Among the group’s key initiatives are the development of a paper on qualification criteria for gene therapy, the strengthening of collaborations between hematologists and hepatologists to enhance clinical management, and a study on the role of the multidisciplinary team in gene therapy. Several new webinars are planned, including a session dedicated to a deeper analysis of the specific contributions of each team member in the management of gene therapy. There are also plans to organise regular meetings to discuss real cases among experts, healthcare professionals, and patient representatives.
Marica Moro
Accreditation and Audit of Haemophilia Centres Working Group
The EAHAD Accreditation and Audit of Haemophilia Centres Working Group was formed in October 2020 to update the current guidelines on the certification of European Haemophilia Centres to include monitoring of novel treatment products and to establish an audit procedure across European haemophilia centres to improve patient care.
The goals are:
- To update the current guidelines on the Accreditation of European Haemophilia Centres to include administration and monitoring of novel treatment products and gene therapy.
- To collect and analyse information about national haemophilia audit practices and procedures in different countries.
- To set standards for the auditing of Haemophilia Centres in Europe to improve the quality of patient care.
- To work in close collaboration with the Gene Therapy Working group to establish the parameters of the Hub and Spoke model.
- To set up a pilot project to evaluate the feasibility, duration, and cost of implementing audits as a permanent part of the accreditation process.
- To establish and coordinate an audit procedure across European haemophilia centres by assessing and improving patient care, creating a culture of quality improvement, and offering education to participants.
Mary Kavanagh, a member of the EAHAD Nurses Committee, is the nurse representative.
Accreditation and Audit of Haemophilia Centres Working Group – EAHAD
Very Rare Coagulation Factor Deficiencies Working Group
The very rare bleeding very rare coagulation factor deficiencies Working Group is formed in 2024 and the focus is on demographics, clinical bleeding phenotype, laboratory phenotype, genotype characterization, treatment strategy and quality of life; to improve health care, concerning diagnosis, genetic counseling and treatment in patients with very rare coagulation factor deficiencies; to define research priorities with the aim to reach all areas in Europe, independent of the socio-economic background; and to facilitate educational sessions for the broad audience of the EAHAD.
Renester Fenton, member of the EAHAD nurses committee, has joined this WG.
Currently, the WG asks for our help to understand current practices in the diagnosis, treatment, and management of very rare coagulation factor deficiencies. The VRCFD Working Group aims to gather insights on screening methods, genetic analysis, peri-surgical and general treatment plans, follow-up care, and family screening strategies.
And for patients, there is a section to share their personal experiences, including the frequency and location of traumatic or spontaneous bleeds, as well as their regular haemostatic treatment. Your input will contribute to enhancing patient care and advancing research in this area.
Very Rare Coagulation Factor Deficiencies Working Group – EAHAD
Joint Health Working Group
The Joint Health in Inherited Bleeding Disorders Working Group is the newest, with it’s primary goal to improve the management of joint health in patients with inherited bleeding disorders, such as haemophilia, through evidence-based research, standardization of care, and educational initiatives. The Working Group will focus on improving early diagnosis of joint issues, improving management based on current best evidence and enhancing overall quality of life.
Malin Svennefalk a nurse from Stockholm Sweden is a member of this WG.
European Principles of Nursing Care for Persons With Inherited Bleeding Disorders
We’re proud to share the European Principles of Nursing Care for Persons With Inherited Bleeding Disorders, a landmark initiative by the EAHAD Nurses Committee.
These principles aim to ensure consistent, person-centred care across EHCCCs and EHTCs, covering everything from treatment and education to surgery and genetic counselling.
Read the full publication: https://onlinelibrary.wiley.com/doi/10.1111/hae.70054
Save the date
2025
June 12-15: The European Haematology Association (EHA) Congress is taking place in Milan, Italy. The EHA community consists of doctors (haematologists), researchers (PhD or otherwise), patients (and advocacy groups), geneticists, nurses, and more, mainly across Europe, including non-EU member states.
June 21-25 The 33rd Congress of the International Society on Thrombosis and Haemostasis (ISTH), taking place in Washington, D.C., USA. ISTH is a worldwide not-for-profit organization dedicated to advancing the understanding, prevention, diagnosis and treatment of conditions related to thrombosis and haemostasis.
September 11-14: The BIC International Conference in Padua, Italy. The conference is about novel advances of basic science and clinical research in haemophilia, rare inherited coagulation disorders, von Willebrand factor and von Willebrand disease, gene therapy, the thrombotic microangiopathies and, of course, factor VIII inhibitors.
October 3-5: The European Haemophilia Consortium 2025 (EHC) Conference in Vienna, Austria. It will be hosted by Österreichische Hämophilie Gesellschaft (ÖHG), the Austrian EHC Member Organisation.
The EHC is an international non-profit organisation representing 48 national patient organisations for people with rare bleeding disorders located in the World Health Organisation (WHO) European region, including 27 Member States of the European Union and most Member States of the Council of Europe.
December 6-9: The American Society of Hematology (ASH) in Orlando, Florida.
The ASH annual meeting is the world’s largest and most comprehensive haematology event of the year. With hundreds of sessions showcasing the latest research and practice trends in haematology, ASH offers multiple ways for attendees to find exactly what they are looking for.