Nurses Committee Newsletter – Fall 2025

What is the history of the EHC? Why is the EHC important to you?

The European Haemophilia Consortium (EHC) was established in 1989 and is headquartered in Brussels. Its original mission was to advocate for the European bleeding disorders community and to influence policies that improve access to care. Today, the EHC’s reach extends beyond the European Union, representing the majority of Council of Europe member states.

How many countries does the EHC represent?

As of June 2025, the European Haemophilia Consortium represents 49 patient organisations across 48 countries, with Kazakhstan being the newest member welcomed by our General Assembly. We are proud to stand for patients from a wide range of countries — from Iceland to Turkey, from Tajikistan to Israel — united by a shared commitment to better care. Our message is clear: no one should be left behind.

What are the short-term and long-term goals?

In short, our mission is to advocate, improve diagnosis and care, and strengthen patient representation at both national and European levels. We achieve this through targeted advocacy and collaboration with key stakeholders, by training and educating our members, and by raising awareness and sharing information on all bleeding disorders.

Who do you collaborate with within Europe, and maybe further?

We collaborate with a wide range of organisations to maximise the impact of our work while avoiding competition or duplication of efforts. We have signed a Memorandum of Understanding with the World Federation of Hemophilia (WFH) to strengthen our joint initiatives. We also work closely with EURORDIS and the European Patients’ Forum (EPF). We also signed a Memorandum of Understanding with EAHAD to try to join our voices and have healthcare providers and patients’ voices aligned.

As a patient organisation, we are a member of the Patients’ and Consumers’ Working Party (PCWP) of the European Medicines Agency (EMA). Our representatives also participate in EUHASS, EAHAD working groups, WFH committees, and the European Reference Network on Rare Haematological Diseases (EuroBloodNet), among other key platforms.

I know that some of this is on the EHC website, but you must click through to get there, and I am afraid few nurses will do.

I warmly invite everyone to explore our main website, www.ehc.eu, as well as our dedicated platforms: www.academy.ehc.eu, which offers a wide range of resources and information that can be particularly valuable for nurses, and www.community.ehc.eu, which highlights the activities and stories of our community.

Nurses play a vital role in patient care, and we are eager to see more of them actively involved in our events, sharing their experiences and best practices to inspire and support others.

And personally, what made you decide to devote your time to EHC?

In short, I’m the mother of three identical twin girls and one boy. One of my daughters has severe haemophilia A, while the other is a carrier. This was entirely new to our family, and it led me to join the French Haemophilia Society in January 2000. As a volunteer, I worked for many years to raise awareness about women with haemophilia and to train nurses on the condition.

In 2024, I became CEO of the EHC after having represented the community on the EHC Steering Committee since October 2013. I am deeply proud to ensure that the EHC is managed in line with our core values: independence, respect, transparency, accountability, and sustainability.

What made you put yourself up for election?

There were two main reasons. On the one hand, I have always been closely engaged in the bleeding disorders community as a patient and a patient representative, which has given me extensive knowledge and diverse perspectives on the complexity of our community and its real needs. On the other hand, I wanted to bring my own contribution by making the work of the EHC more tangible — focusing on practical advocacy tools that empower our member organisations. My vision has never been for EHC to “take over” their issues, but rather to support them with resources, knowledge, and advocacy strategies so they can strengthen care and treatment in their own countries.

During the past year, what made you happy or sad in relation to your work for EHC?

I am always happy when I see that EHC can make a real difference in the lives of our member organisations. It inspires me to witness a renewal of mindsets within associations — when people understand that self-advocacy, both individually and collectively, is what drives real

change. I am also deeply encouraged when I see empathy within our community, when partners treat each other as equals, helping and learning from one another.

More than sadness, what I sometimes feel is dissatisfaction when this does not happen. But even those moments serve as extra motivation to continue working with dedication, because they show us where we still need to push forward.

What do you value about the bleeding disorder nurses in your treatment centre, and is there something you miss?

I highly value the dedication, expertise, and day-to-day care that nurses bring to our community. They are often the fi rst point of contact for patients and families, and their role is essential. However, I sometimes feel that across Europe their voice and expertise are not equally recognised in treatment centres. Nurses should always have a prominent role in the management of bleeding disorders, with their knowledge and perspective fully integrated into decision-making. Achieving this equality and harmonisation is hard work, but it is necessary if we want a stronger and more patient-centred healthcare system.

What is the most important thing you want others with a bleeding disorder to know about EHC?

The EHC is a consortium of 49 national member organisations, and its greatest strength lies in the diversity of knowledge and experiences across these communities. It is not an entity in isolation — it is the collective of all our members, each contributing and sharing responsibility for the well-being of all. This applies both across different national realities and across different bleeding disorders.

I would like people to see EHC as a beacon of empathy and inclusion. For me, that is the essence of true advocacy: an organisation that represents people with bleeding disorders by listening, uniting, and standing together.

What made you put yourself up for election?

Since 2004, I have been actively involved in the bleeding disorders community in Galicia and Spain. I have type 3 von Willebrand disease, and for many years, I was the only person with VWD in my regional association and one of the few women involved; everyone else was a boy with haemophilia.

Over the years, I have learned that the most effective way to raise awareness is to increase visibility. What is not seen or named simply does not exist.

In 2023, I volunteered to join the von Willebrand Committee (vWD). For me, it was essential to connect with more people living with VWD and explore how we could raise awareness of such an under-recognised condition at a European level, especially since reaching these patients is often a challenge. Since then, I’ve done my best—together with my fellow committee members—to share my experience and help make VWD more visible.

In 2024, I decided to run for the Steering Committee (SC) because I saw it as an opportunity to learn more about how other countries work and to contribute our own experience to help strengthen the community. It was also a chance to continue raising awareness about von Willebrand disease and the women living with bleeding disorders.

During the past year, what made you happy or sad in relation with your work for EHC?

What excites me the most is the strong sense of community and the number of volunteers who are involved. I find it heartening that, no matter what country you’re in, this shared way of working and connecting remains the same. What saddens me the most is seeing how many countries still lack access to adequate treatment. There is still a long road ahead of us.

What do you value about the bleeding disorder nurses in your treatment centre, and is there something you miss?

Haemophilia nurses are an essential part of the care team for people with bleeding disorders. From diagnosis to long-term follow-up, they are a constant presence, helping us manage our condition and learn how to live with it. In my experience, they are often more sensitive to the needs of women with bleeding disorders than doctors. Bleeding disorders go far beyond treatment alone, and nurses often understand that best. What I feel is lacking is the presence of specialised nurses in every centre. In Spain, due to our decentralised healthcare system, not all hospitals—especially smaller ones—have a haemophilia nurse, and this is absolutely essential.

What is the most important thing you want others with a bleeding disorder to know about EHC?

Aside from the fact that they can find a wealth of information on our website—not just about how we work, but also about bleeding disorders and much more—I believe it’s vital for people with bleeding disorders to know that the EHC is a European umbrella organisation that represents us on a broader level. Having influence at the European level is increasingly important, as decisions made by bodies like the European Parliament or the EMA directly affect us—both as individual patients and as countries. It’s crucial for policymakers to understand our situation so that legislation and regulations work in our favour. In addition, the EHC supports national organisations facing more complex situations and in need of assistance. It also creates training and exchange opportunities that, in my opinion, are a fantastic way to learn and bring valuable experiences back home to continue making progress.